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Tuberous Sclerosis Alliance Summer 2002 | Volume 97 inspiring caring helping supporting HELP SECURE PATRICIA HEATON AND JENNIFER VOLUNTEERS $10 MILLION FOR LOVE HEWITT LEND CELEBRITY MAKE A TS RESEARCH APPEAL TO TS ALLIANCE DIFFERENCE page 8 page 11 pages 14-15 Chairman’s Letter Marion S Adams III 801 Roeder Road, Suite 750 Chairman of the Tuberous Sclerosis Alliance Silver Spring, MD 20910 USA (301) 562-9890 Toll-free: (800) 225-6872 Fax: (301) 562-9870 I t is hard to believe that it was five years ago when I Web site: http://www.tsalliance.org Summer 2002 • Volume 97 first made contact with the Tuberous Sclerosis Michael J. Coburn, Alliance (TS Alliance). This was soon after my now 6- President and CEO Marybeth Leongini year-old son Robin was diagnosed with tuberous sclerosis (TS). As I sit here at Managing Editor, Director of Communications the end of my two-year term as chairman of the TS Alliance Board of Directors, Beth R. Michaels I have mixed emotions, but definitely a great deal of satisfaction about the status Contributing Editor, If you have opinions, questions or articles for of the organization. Perspective, we would like to hear from you. Please contact the managing editor to obtain a Submissions The TS Alliance became a major part of my family’s life and helped us in so Form and Guidelines. many ways. It started with that first contact when we found out that we were Perspective is intended to provide basic information about tuberous sclerosis. It is not intended to, nor not alone and that there was hope. Since that time, we have gotten information, does it, constitute medical or other advice. The Tuberous Sclerosis Alliance (TS Alliance) does not support and help during times when we thought it just could not get any worse. promote or recommend any treatment, therapy, institution or health care plan. Readers are warned not to take any action without first consulting a physician. We also have a new network of friends with whom we share a very special bond. Commentary expressed herein reflects the personal opinions of the author and does not necessarily reflect This organization has definitely made this journey a little bit easier. the official views of the TS Alliance. Information contained in the TS Alliance database is confidential I am amazed at what the TS Alliance is doing today compared to five years and not provided nor sold to third parties. ago. I have seen the organization celebrate its 25th anniversary. I have seen us put Perspective is published quarterly by the National Tuberous Sclerosis Association, Inc. d/b/a Tuberous Sclerosis Alliance, a 501(c)(3), charitable on two very successful National Family Conferences. I have attended scientific and organization. ©Copyright 2002 by the Tuberous Sclerosis Alliance. All Rights reserved. Materials may medical meetings with the top professionals in TS, as they were envisioning the not be reproduced without written permission. Direct requests for reprint permission to the future and helping set a protocol to further guide the organization. managing editor. We have successfully found two genes that cause this disorder. We are Board of Directors Marion S. Adams III, Chair funding more research than ever, as well as causing more research to happen. We Frank Gallagher, Vice Chair David Parkes, Secretary Celia Mastbaum, Treasurer have Congress and the National Institutes of Health interested in TS. We have Belinda Phillips, Past Chair Thomas Bologna more information, more services and more programs than ever. We have more Andrew Bott Elizabeth Buchsbaum, Esq. individuals serving as volunteers, and we have put together a dedicated, Chris Dinsdale Charles Eggert committed and professional staff that make us all proud. Craig Elias L. Andrew Fleck Kathy Groves I want to thank all of you for the inspiration and support you have given Carol Herscot Christy Hobart me in the last couple of years. My work with the TS Alliance has been a major Yukari Iwatani Kane Scott Johnson time commitment that certainly has had an impact on my work colleagues as David Kwiatkowski, M.D., Ph.D. Susan Lamont, Ph.D. well as my family. I came to this organization because of Robin. However, I Carol Michael Mary Jane Mudd have been driven not only by him, but by many of you that are battling this Hope Northrup, M.D. Bonnie Gould Rothberg, M.D. Chris Russell disorder every day. This is definitely a team effort, and we are certainly more David Scott Marc Shapses powerful in numbers. I am proud to have helped steer this organization for a Patrick Sheffield Jerrill Sprinkle short period of time. Elizabeth Thiele, M.D., Ph.D. Williams Watts The TS Alliance is making a difference. The future looks brighter than ever. Endowment Fund Board of Directors While I am ending my term as chairman, you will not be getting rid of me, as I Mark Hyman, M.D., Chair Wilfred Cooper, Sr. Michael Elias will be serving out two more years of my eligibility on the board of directors. Cathy Krinsky James Lawler The new leadership team is strong, and I am confident they will take our Doug Loftus Paul Robertson organization to an even higher level. Let’s keep the ball rolling. Al Rosen Nancy Scott Jerrill Sprinkle PERSPECTIVE 2 New TS Alliance Leadership Elected at Annual Meeting T he annual meeting of the insight and passion to the organization past five years, successful businessman Tuberous Sclerosis Alliance (TS and each very personally knows the and father of a daughter with tuberous Alliance) was held on March challenges resulting from a family sclerosis, was elected chair of the board 23, 2002, in Washington, D.C., in member having tuberous sclerosis (TS). of directors at the March board meeting. conjunction with the spring board of Frank brings great enthusiasm and directors meeting. In accordance with Welcome New Board passion for the mission of the TS the bylaws of the organization, a ballot Members Alliance and will preside over the was mailed to all active members of the Fred Linder is president of organization’s operations for the next TS Alliance to elect individuals to serve New Hope Natural Media year as chair. on the board. Ballots were mailed on a n d r e s i d e s i n B o u l d e r, Frank lives in Denville, New Jersey, February 20 to 1,362 active members, Colorado. He has significant and is vice president of operations at with 371 proxy ballots returned by the business experience with special focus Clark Davis Associates in Parsippany. deadline of March 20, and representing in finance and operations. Fred is He has served in many capacities a quorum as established in the bylaws. interested in helping the TS Alliance during his tenure on the TS Alliance We are pleased to announce that the increase its financial success through his Board, including chairman of the following individuals were elected to business acumen and assistance with Development Committee, a member of serve or continue their service on the fund raising. Fred’s interest in the TS the Executive Committee, as vice TS Alliance Board of Directors: Alliance comes from his close chairman and secretary of the board, as relationship with board member Craig well as a number of subcommittees and Thomas Bologna, Elias and the Elias family. projects teams. Frank and his wife Rancho Santa Fe, California John Richards is the father Laura have three daughters. They Elizabeth Buchsbaum, of a 2-year-old son with TS. established the Courtney Leigh Small New York, New York He is partner in the law firm Steps fund, which provides major Charles Eggert, o f Tr o u t & R i c h a r d s , support to the TS Alliance research Portland, Oregon P.L.L.C. in Washington, D.C. During program in honor of their daughter Frank Gallagher, the past year John has been actively Courtney, who has TS. Denville, New Jersey involved with the TS Alliance Other officers elected by the Carol Herscot, government relations efforts and has a board are: Boston, Massachusetts strong desire to continue this work. Yukari Iwatani Kane, Stephany Sherman returns Vice Chair: Chicago, Illinois to the board of directors after Scott Johnson of Santa Rosa, California Fred Linder, a one-year hiatus. She resides Treasurer: Boulder, Colorado in Atlanta, Georgia, and is Stephany Sherman of Atlanta, Georgia John Richards, the mother of three children, including Secretary: Alexandria, Virginia one twin with TS. Stephany has been Celia Mastbaum of Marlboro, New Jersey Marc Shapses, an active volunteer for the TS Alliance Plainview, New York having served as a board member from Thank You Marion Stephany Sherman, 1998 to 2001 and as treasurer and chair Adams for Leadership Atlanta, Georgia of the finance committee from 1999 – 2001. and Passion William Watts, Stephany is a CPA, having worked both The Tuberous Sclerosis Alliance Sewickley, Pennsylvania in public accounting with Ernst and salutes and thanks Marion Adams III Young and industry with the Coca-Cola for serving as chairman of the board of The board is responsible for Company and Coca-Cola Enterprises. directors during the past two years. It governing the organization, including has been a period of renewal as we have setting direction and objectives to fulfill New Elected Officers increased our service to the TS our charter as a voluntary health It takes dedication and leadership to community and accelerated research to organization. The board represents the develop and manage a growing find treatments and a cure for TS. interests of the TS Alliance’s constituency organization and provide inspiration Under Marion’s leadership, the TS and has legal and financial responsibility and motivation to a board of directors Alliance has become a vocal and for the organization. Each member of comprised of 29 individuals. Frank stronger advocate for the TS community. the board of directors brings skill, Gallagher, active board member for the The organization has increased continued on page 7 3 SUMMER 2002 Coordinated Clinical Care Through TS Clinics T he Tuberous Sclerosis Alliance (TS Alliance) supports the vital role that a tuberous sclerosis (TS) clinic can Each clinic begins at 9 a.m. and runs approximately until 1 p.m. Several families attend each session for the purpose nephrology, neurology, neuropsychiatry, neurosurgery, ophthalmology and pulmonary medicine. play in improving the lives of those of data collection and consultation. Children and adults of any age can affected. Below is information on a new At the clinic, a family history be seen by a specialist to address clinical TS clinic and updates on existing clinics questionnaire is reviewed. Dr. McClintock issues of all types that may occur in in your region. For a complete listing of and Phillip Pearl, M.D., will review and tuberous sclerosis. The clinic provides TS clinics in the United States, or for examine you or your child. A medical all levels of care, including the more information on the clinics below, student or intern/resident may assist evaluation of previously undiagnosed please contact the TS Alliance. them. An important additional function patients, ongoing follow-up care, and of the clinic is to teach young physicians management for TS patients St. Louis TS Clinic To Open and medical students about TS. w i t h a known diagnosis and prenatal St. Louis Children’s Hospital is Andrea Gropman, M.D. (geneticist), counseling. The interventional radiology pleased to announce the opening of their Mark Mausner, M.D. (plastic surgeon), specialists provide consultation regarding TS clinic. Officially opening July 17, and Gilber Vezina, M.D., are all embolization of renal angiomylipomas. 2002, the clinic will be directed by Kevin available for consultation during clinic In association with the PENN C. Ess, M.D., Ph.D., and will provide hours. If a family would like to have a Epilepsy Center, the Clinic Without comprehensive multidisciplinary care for member screened to rule out diagnosis, Walls has a particular interest in TS individuals with tuberous sclerosis. this would be the perfect opportunity patients with intractable seizures who The clinic will enjoy support from to do so. The whole family is encouraged may require epilepsy surgery. Research many pediatric sub-specialties at St. to attend the clinic. on TS is ongoing at the University of Louis Children’s Hospital, including Several times a year, a guest speaker Pennsylvania in Dr. Crino’s laboratory. pediatric neurology and epilepsy, will come to the clinic and give To learn more about research in n e u r o s u r g e r y, n e u r o p s yc h o l o g y, a presentation after clinic hours. Dr. Crino’s lab, visit the Web site: genetics, cardiology and nephrology. Refreshments are provided. www.uphs.upenn.edu/ins/faculty/crin Dr. Ess is actively studying the For questions about the clinic or to o.htm. Questions regarding TS or function of the TSC genes in brain schedule an appointment, please contact visits to the Clinic Without Walls can development and epilepsy in the Nancy J. Elling, R.N., at (571) 226-8343. be sent by e-mail to Dr. Crino at laboratory of David H. Gutmann, M.D., email@example.com. For an Ph.D., a member of the TS Alliance’s Pennsylvania’s Clinic appointment at the Clinic Without Center Without Walls research consortium Without Walls Walls, call (215) 349-5312. and Professional Advisory Board. T h e “ C l i n i c W i t h o u t Wa l l s” The clinic plans to be an active program at the University of University of Chicago partner with the St. Louis community Pennsylvania Medical Center and TS Clinic in developing a local TS Alliance. Children’s Hospital of Philadelphia is The TS Clinic at the University of Coordinating this effort is Debbie co-directed by neurologist Peter B. Chicago has been in operation for Coleman who encourages everyone Crino, M.D., Ph.D., and geneticist approximately 15 years. It is lead by interested in learning more about the Katherine Nathanson, M.D. Jennifer Pe t e r Hu t t e n l o c h e r, M . D . , a n d clinic and the TS Alliance to attend. Farmer, M.S., C.G.C., serves as the attended by Michael Kohrman, M.D. For more information on the TS clinical coordinator. The multi- Clinic is held the third Friday of every Alliance of St. Louis contact Debbie disciplinary clinic primarily serves month in the afternoon. Coleman at firstname.lastname@example.org patients living in Pennsylvania, New Keyoumars Soltani, M.D., clinic For more information and Jersey, Delaware and Maryland, but dermatologist, is available for appointments, please call St. Louis also welcomes TS patients from around consultation if notified prior to the Children’s Hospital, Division of the country. visit. Dr. Soltani has been working with Pediatric Neurology at (314) 454-6120. T h e C l i n i c W i t h o u t Wa l l s i s the clinic for a number of years and has comprised of more than 20 medical vast experience with angiofibroma TS Research Clinic in sub-specialists dedicated to the treatment. Deborah Karczewski, R.N., Washington, D.C. evaluation and treatment of patients and Patti Ogden also attend the clinic. The TS clinic of the Washington with TS. The physician staff includes A social worker is available as needs Metropolitan Area is under the medical pediatric and adult specialists in arise. For an appointment, please direction of William McClintock, d e r m a t o l o g y, g e n e t i c s / g e n e t i c contact Sharon at (773) 834-8064. M.D. The clinic is scheduled to meet counseling, interventional radiology, every other month starting in September. maternal and fetal medicine, Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 4 TS Alliance Funds $ 1 Million in Research The Tuberous Sclerosis Alliance (TS further scientific understanding of TS. toward finding a cure for TS. The Alliance) has awarded $1 million in A coordinated effort to understand TS award is made possible through a funding to research laboratories within and discover molecules relevant to TS special research fund established by Dr. Harvard Medical School, Brigham and and the P13K pathway could expedite Jonathan Rothberg, his wife Bonnie Women’s Hospital and Massachusetts the development of therapeutic Gould Rothberg, M.D., and the General Hospital. This three-year interventions for TS. Participating Rothberg family. award made through the Tuberous laboratories include those of John The TS Alliance is working closely Sclerosis Alliance Rothberg Award for Blenis, Ph.D., Lewis Cantley, Ph.D., w i t h t h e Ro t h b e r g In s t i t u t e f o r Courage in Research will allow five and the Institute for Chemistry and Childhood Diseases, a Guilford, l a b o r a t o r i e s w i t h i n t h e Ha r va rd C e l l Bi o l o g y ( I I C B ) d i re c t e d by Connecticut-based non-profit research community to work collaboratively to Timothy Mitchison, Ph.D. at Harvard i n s t i t u t e t o s e e k o u t i n n ov a t i v e advance basic science research as it Medical School; Iswar Hariharan, researchers at all levels, from post- pertains to tuberous sclerosis (TS) in M.D., Ph.D., at the Massachusetts doctoral fellows to accomplished the hopes of identifying future General Hospital and David scientists. A primary objective of this direction for the development of Kwiatkowski, M.D., Ph.D., at Brigham joint effort is the creation of a effective treatments and the eventual and Women’s Hospital. consortium of some of the most capable discovery of a cure. The TS Alliance Rothberg Award scientists in the fields of cellular and A shared focus of the participating for Courage in Research was established m o l e c u l a r b i o l o g y, c h e m i s t r y, laboratories is to identify the role of the to recognize outstanding scientific biochemistr y and bioinformatics P13K signaling pathway in an effort to research that advances the knowledge conducting research on TS. TS Alliance Presents $100,000 Deadline Extended Award to Yale Researcher for Department of Defense Tuberous The Tuberous Sclerosis pathways identified by TS researchers, Sclerosis Complex Alliance (TS Alliance) is pleased to announce that including Tian Xu, Ph.D., of the Yale Medical School and assistant Research Program David J. Austin, Ph.D., investigator with the Howard Hughes For investigators submitting to associate professor of Medical Institute and prior recipient of c h e m i s t r y a t Ya l e the TS Alliance Rothberg Award for the FY02 Tuberous Sclerosis University, has been named recipient of Courage in Research. Research Program, the due date the TS Alliance’s Rothberg Award for Dr. Austin received his bachelor of for electronic receipt of Courage in Research. The Rothberg arts and master of arts in chemistry at proposals has been changed to award was presented to Dr. Austin’s the University of South Florida and his September 18, 2002. Electronic laboratory in support of the therapeutic doctorate in chemistr y at Emor y Letters of Intent should be discovery program recently announced University. He joined the Yale faculty in by the Rothberg Institute for Childhood 1996 after serving as an American submitted as soon as possible, Diseases and the TS Alliance. Cancer Society Postdoctoral Fellow but no later than September 4, The Austin laboratory is focused in Chemical Biology at Har vard 2002. Scientific peer review for on a research effor t that applies University in the laboratory of Stuart L. the program will take place in combinatorial and computational Schreiber, Ph.D.. He is the recipient of November 2002, and chemistry to test chemical compounds numerous awards including a Research Programmatic Review will take against new therapeutic targets in Corporation Research Innovation tuberous sclerosis (TS) with great Award (1997), the Johnson & Johnson place in January 2003. emphasis on life saving interventions to Research Institute Focused Giving Investigators will be notified of treat terminal conditions that may Aw a r d ( 1 9 9 9 ) , t h e A s t r a Z e n e c a their funding status in develop, such as renal and pulmonary Pharmaceuticals Excellence in February 2003. complications. Drug discovery efforts Chemistry Award (2000) and an Alfred will also focus on the varied clinical P. Sloan Foundation Fellowship (2001). For more information visit expressions of TS and other potential He is also a co-founder of Ambit disorders linked to the TS tumor Biosciences Corporation. http://cdmrp.army.mil/funding/ suppressor gene proteins and molecular 02tscrp1.htm 5 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e Research Update by Vicky Holets Whittemore, Ph.D. Below are summaries of recent studies 2) Peter Crino, M.D., Ph.D., and purpose of understanding how focused on brain development and collaborators at the University of mutations within these genes result in seizures in Tuberous Sclerosis (TS). Pennsylvania, consider the patterns of abnormal brain development. The abnormal brain development that are review by Dr. Crino discusses how 1) A review by William McClintock, encountered in infants, often with novel techniques allowing for analysis M.D., from Washington, D.C., focused infantile spasms, and in children and of patterns of gene expression within on the clinical aspects of TS, particularly adults with intractable epilepsy. They single cells, including neurons, is likely the intractable nature of the seizures in discuss the treatment of epilepsy to provide answers to the most vexing individuals with this condition. He associated with some of these brain and important question about these pointed out that early identification abnormalities, such as focal cortical lesions: Why do they cause seizures? and diagnosis of TS is important to dysplasia and tubers of TS, which may ensure proper monitoring and genetic include cortical resection performed to *For a complete listing of references for this article, please contact the Tuberous Sclerosis Alliance. counseling, and that physicians should remove the “dysplastic” or abnormal be aware of the marked variability of region of the brain. Vicky Whittemore, Ph.D., is the director for the expression in all the clinical features of Over the past 10 years there has Center Without Walls and is the senior science TS . He a l s o p o i n t s o u t t h a t t h e been an explosion of information on advisor for the Tuberous Sclerosis Alliance. neurologist must be aware of other the genes involved in abnormal brain organ involvement, particularly the development. The genes responsible for lungs in female patients and the many of these disorders have been kidneys, to ensure appropriate identified and now permit important monitoring for complications. studies to be carried out with the New Perspectives in Tuberous Sclerosis Complex Research Conference September 19-22, 2002 / Westfields Marriott, Chantilly, VA Sponsored by the Tuberous Sclerosis Alliance and the National Institutes of Health with lead funds from the National Institute for Neurological Disorders and Stroke WHAT IT IS LOCATION A scientific conference on tuberous sclerosis (TS) with a The Westfields Marriott in Chantilly is a state of the art goal to develop a comprehensive research plan for TS. The facility. It evokes the charm of Virginia's magnificent plan will serve as a blueprint for future research endeavors colonial estates, and combines sophisticated conference on this genetic condition. Attendees will evaluate progress facilities, elegant accommodations and exciting resort in TS research, identify new research initiatives and activities. Westfields is located seven miles south of Dulles outline research priorities. International Airport. Invited scientists and clinicians will present their solicited FOR MORE INFORMATION… abstracts. Breakout sessions will be available to discuss Contact Vicky Whittemore by email at future research opportunities and research initiatives. Vicky.email@example.com. About reservations, call Holly Knorr at (800) 225-6872, WHO SHOULD ATTEND or visit www.tsalliance.org. Scientists, physicians and clinicians from the U.S. and abroad with a focus on tuberous sclerosis complex and an To view the conference agenda, visit: interest in formulating the TS research agenda. www.tsalliance.org/Research/Conference.asp. Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 6 Scientist Spotlight challenges remain to be explored in the is using the Eker rat model–animals that immature central nervous system. have a mutation in the TSC2 gene–as Focusing on the hippocampus (part well as human tissue removed from of the temporal lobe that is involved in individuals with tuberous sclerosis (TS) at learning and memory) and the cerebral the time of surgery for intractable epilepsy. Scott C. Baraban, Ph.D. cortex as key structures in epileptogenesis, Dr. Baraban hopes to learn more Assistant Professor and Director, his laboratory is using a variety of electro- about the properties of abnormal Epilepsy Research Laboratory, physiological and molecular approaches neurons that are found within tubers. It Neurological Surgery to study the properties of individual is believed that cells within these tubers University of California, neurons in animal models of childhood contribute to the initiation and San Francisco seizure disorders, as well as in human brain propagation of abnormal seizure activity tissue obtained from children under- in individuals with TS. Dr. Baraban’s research interests are going surgery for intractable epilepsy. A n a d d i t i o n a l p r o j e c t i n D r. focused on childhood seizure disorders, One major aspect of Dr. Baraban’s Baraban’s laboratory group, carried out which are among the most common research is the development and analysis by Maria Elisa Calcagnotto, M.D., will forms of epilepsy and are often resistant of animal models that mimic specific focus on how tuber cells communicate to conventional anticonvulsant childhood seizure disorders. Along these in the Eker rat model. Overall, a better medications. While we have learned lines, the Tuberous Sclerosis Alliance is understanding of how tuber cells much from studying epilepsy in the currently funding his research grant function will help us to understand what mature brain, both clinical experiences entitled “Electrophysiological Properties causes seizures in individuals with TS so and experimental observations suggest of Abnormal Giant Cells in Tuberous that novel treatments and therapies can that many unique questions and Sclerosis.” For this work, his laboratory be developed. New Leadership-continued from page 3 yo u n g c h i l d d i a g n o s e d w i t h TS . active and vibrant governing board. awareness and resources necessary to Marion’s personal commitment was to The bylaws, as well as best practices in support additional services and cause help the TS Alliance get answers we all non-profit management, limit the more research to take place, and we ask about finding better treatments, number of consecutive terms that an have become a successful and efficient improving care, and obtaining the individual can serve to two terms (each organization of which members, donors resources necessary to help nurture the term being three years). The TS and the community served by the TS development of a loved one with TS Alliance, therefore, thanks the following Alliance can be proud. and make sure that all the scientific individuals who are completing six It has been Marion’s drive and focus resources we can muster focus on years of service to the organization and that led the organization through an finding ways to beat TS. whose contributions to the board will important name and identity change; We thank Marion for his ongoing be missed. But, as active members of brought bold and new research commitment to the TS Alliance and the TS Alliance, we look forward to collaborations; began an aggressive we thank his family for sharing their ongoing support and involvement: campaign to get the attention of unselfishly the talent and passion Andy Fleck of Dallas, Texas, has Congress and engage the federal Marion brought to the organization as been an active member of several government in TS research; brought chairman. He will continue to serve on committees over the years. Sue Lamont, together a talented and dedicated the board and will always tell his Ph.D., of Ames, Iowa, has been chair of professional staff to increase support colleagues on the board and staff to the Center Without Walls and scientific and services and greatly improved the stay focused and “keep it going.” adviser to the organization. Dave Scott organization’s financial stability. of Fenton, Michigan, has been actively The entire community served by Thank You Outgoing involved in a number of projects and the TS Alliance has benefited from this Board Members For committees. father who, only a few years ago, turned Dedicated Service We thank each of these outstanding to the only organization that was able The bylaws of the TS Alliance individuals for all their efforts on behalf to help his family through the initial require the rotation of board terms so of the entire TS Alliance community. and ongoing stages of dealing with a that the organization can maintain an 7 SUMMER 2002 Government Relations Update T he Tuberous Sclerosis Alliance provide research involvement and Contact your representative in (TS Alliance) government support from a number of individual Congress to: relations program is in full institutes under the NIH umbrella. swing working to get federal support We are asking the House Appropriations • Urge them to support a $10 million for tuberous sclerosis (TS) research Committee to place specific language a p p ro p r i a t i o n t o t h e Tu b e ro u s and awareness. One of last year’s in the appropriations bill for NIH to Sclerosis Complex Research Program accomplishments was getting both include TS in its programs. in the Congressionally Directed the House and Senate to adopt House Medical Research Program. Concurrent Resolution 25, which acknowledged the importance of Help Get Needed • Let them know that at the current federal support for TS research and Research Dollars funding level of $1 million, the requested action by the National You can help the TS Alliance by Congressionally Directed Medical Institutes of Health. contacting your representative in Research program cannot be effective. The TS Alliance is now working Congress and the two senators from More funding is necessary to improve to make sure that Congress and the your state and asking for their program efficiency and to yield federal research and medical support of legislation that provides significant research advancements. community become active partners in resources for tuberous sclerosis. research, clinical care and medical A visit with your congressional • Ask them to contact Rep. Jerry awareness. The TS Alliance has representative can be highly effective. L e w i s , c h a i r m a n o f t h e Ho u s e several major initiatives underway: You can contact their district office in Appropriations Subcommittee on your state to ask for an appointment. Defense, in support of the proposed • Partnering with the National A letter, e-mail or phone call will get $10 million in funding for the Institutes of Health (NIH) to develop the attention of your representatives Tuberous Sclerosis Complex Research a research plan for TS. NIH and the in Washington, D.C.. Members Program. National Institutes for Neurological of Congress act on issues that are Disorders and Stroke and the TS important to their constituents. This • Ask them to request that NIH Alliance are co-sponsoring a three-day is your opportunity to let them know increase support for tuberous sclerosis scientific conference in September to TS research is important to you. in the bill making appropriations for develop this plan (see page 6). Labor, Health and Human Services and Education for 2003. • Working with the Department of Ways That You Can Help! D e f e n s e a n d t h e U . S . A r m y ’s Contact the two senators from The TS Alliance Web site has Congressionally Directed Medical your state to: sample letters and other advocacy Research Program to begin funding tools that you can use to help educate TS re s e a rc h t h ro u g h t h e A r m y • Urge them to support a $10 million your representatives in Congress. If program. This collaboration is a result appropriation for the Tuberous you do not have access to the of our success last year in getting $1 Sclerosis Complex Research Program Internet, you can call the TS Alliance million in research funds earmarked in the Congressionally Directed at (800)-225-6872 and ask for in this research program. Medical Research Program. government advocacy information to be sent to you. Please send any copies • Seeking $10 million in TS research • Let them know that at the current of correspondence you send to funds though the Department of funding level of $1 million, the Congress to the TS Alliance office: Defense Congressionally Directed Congressionally Directed Medical c/o Government Relations Coordinator, Medical Research Program. We are Research program cannot be effective. 801 Roeder Road, Suite 750, Silver seeking inclusion of this $10 million More funding is necessary to improve Sp r i n g , M D 2 0 9 1 0 . If yo u a re request in the appropriations bill that program efficiency and to yield contacting your representative by e- provides funding for the Department significant research advancements. mail please send a blind copy of your of Defense. e-mail to firstname.lastname@example.org . • Ask them to request that NIH • Continuing to urge the Director of increase financial support for TS the NIH to prioritize TS research and research in the budget for 2003. Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 8 Welcome New Staff President’s The Tuberous Sclerosis Alliance (TS Alliance) is pleased to Message Mike Coburn President and CEO of the Tuberous Sclerosis Alliance welcome the following additions to its staff. Cheryl Dunigan, Ph.D., W hen the organization adopted its new name and identity as the Tuberous Sclerosis Alliance in December 2000 (formerly the NTSA), and we chose to include the word “alliance” joins the organization as vice president of scientific affairs. Her in our name, I wrote in this column that the future for our organization’s ability to responsibilities will include better serve the tuberous sclerosis (TS) community would be through new and emerging alliances. It is through collaborations and alliances that we can collectively working closely with new pool together the talent and resources necessary to advance our mission to find a cure research partners and institutes and improve the lives of all affected by TS. Here we are today with new partnerships and assisting with the that bring new resources to provide more awareness on a local and national level, development of an overall increased funding to help get the resources we need, and significant increases in research strategy for the scientific and medical research. organization. Dr. Dunigan will Among the collaborations that have emerged are the 10 Community Alliances bring additional basic and formed in the past year (see pages 18-19). These volunteer groups bring families and clinical scientific resources to the friends together locally or regionally for support groups and fund-raising and organization as it continues to awareness events. During the past year, they helped hand deliver more than 2,000 form new scientific and clinical medical awareness packets to physicians to help broaden medical knowledge about partnerships. Dr. Dunigan the importance of early diagnosis and proper care for those with TS. We expect 10 recently served as scientific additional Community Alliances to form in the coming months. director with the International The formation of a new non-profit research institute to work alongside the TS Rett Syndrome Association. Alliance brings great hope for all those with TS, with the sole focus of discovery of drugs that may one day stop the damage caused by TS. Our partnership with The Rothberg Nicole Engdahl Institute for Childhood Diseases brings together the incredible scientific expertise of the Rothberg Institute with resources of the TS Alliance and our growing community. joins as Director of Donor The Rothberg Institute for Childhood Diseases is using some of the most Relations. Nicole has more than innovative technology in the search for effective treatments for TS. Thousands of five years of development individuals, most of whom have never heard about TS, are now involved through the experience, including cultivating Rothberg Institute’s software program called “Community TSC”. The downloaded individual donors and corporate program allows them to use idle time on their personal computers to evaluate sponsors, organizing special potential chemical compounds as drug targets for TS. events, and developing volunteer Our work with Congress has resulted in a fantastic partnership with the National workshops and training sessions. Institutes of Health (NIH), who is a co-sponsor with the TS Alliance of a scientific She comes to us from St. Olaf conference devoted solely to devising scientific strategies and approaches to curing College where she worked in the TS. The federal government is also implementing a new tuberous sclerosis research annual giving department and program within the Department of Defense Congressionally Directed Medical previously worked for the Cystic Research Program. Again, this is due to the alliances we have developed with Fibrosis Foundation. members of Congress who are helping advocate for TS research and awareness. Clinical alliances are also evolving. The recent opening of a comprehensive clinic Marybeth Leongini and research program at New York University affiliated with the NYU Comprehensive Epilepsy Center, and a growing clinic at the Pittsburgh Children’s is now serving as Director of Hospital are providing better coordinated care for TS patients. The TS Alliance has Communications . She comes to placed a high priority on establishing additional clinics in the coming year as well as us from the Spina Bifida a network of clinical research centers. Through these centers we will develop a Association of America (SBAA) comprehensive clinical database that will support ongoing and future research by in Washington, D.C., where her better correlating clinical expressions of TS with advancements in genetic and responsibilities included public molecular studies of the disorder. awareness campaigns, media Indeed, alliances are critical to the advancement of our mission and we will relations and publication continue to seek out the best-qualified partners to provide information, research, management. clinical care and other services to those whom we are committed to serve. 9 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e TEARS AND LAUGHTER–MY JOURNEY WITH TS By Susan Diaz McBrine M ore than 25 years ago, I helped found the National Tuberous Sclerosis Association (NTSA), now seizures and tumors. Despite excellent medical care and consultation, she lost one kidney at age 18 and tumors for every part of Stacia’s life. I have learned not to blame or condemn those who cannot or will not help her the Tuberous Sclerosis Alliance. My in her remaining kidney have or us. I have learned that the world of dream was that no family would ever continued to grow. the disabled is a special world that I feel alone in battling this disease and Now our options are dialysis or am glad that I have been allowed to that someday there would be a transplant. Due to all the other TS enter. Today, I am a special educator genetic test, better treatments and complications, dialysis would working with 16 to 22-year-old maybe even a cure. only be torture for her. She students with severe disabilities. To d a y, m y d a u g h t e r would not understand the I have learned that my three other Anastacia (Stacia) is 30 long treatment, and her children have turned out to be better, years old. Most of my fragile body would more compassionate, caring people dream has come true most likely reject a because of sharing Stacia’s life. and for that I am transplant. So I have I urge all of you to become a eternally grateful. I decided, after much conservator when your child is an am proud that other consultation and adult and to name another person, families don’t have agonizing, to let perhaps one of your other adult to desperately search Stacia at Stacia die with children, as co-conservator. If I for help and hope age 6. dignity and without should die unexpectedly, Stacia would like we did in the suffering. It is the still have a loving sibling to make early 1970s. I am same decision I decisions about her care. It allows especially happy that would make for my me to have her tissues and organs my three other other children or donated for research. It allows me children can benefit myself, but it is the to not have to argue with any from a genetic test before hardest thing I have ever professional about what she needs or they become parents. done. She is still enjoying doesn’t need. I am writing this with life at the moment, but is For the past three years, Stacia has great sadness, but also great hope becoming more tired. lived in a group home. It finally for the future for other families I share this with you to help became a necessity to get her the care affected by tuberous sclerosis (TS). each of you to cope with this terrible that she and I needed. I learned that Stacia has only a few months to live disease in a more positive way. First I she is happier and more independent due to complications. have learned to love Stacia for who without me. She I have spent my life trying to she is and not who I wanted her to deserves living with Staciaschool high at her cope with and find answers to the be. I have learned to grieve for the friends, experiencing prom. many symptoms and medications Stacia who isn’t normal. I think in roommates and a social that have affected Stacia. I can say many ways she is happier than I am life. Letting go is hard that she has had a good life, been because she doesn’t know she is for parents of any loved and participated in quality different and that she is dying. She is child, doubly so with special education programs. She has a braver person than I could ever TS children, but also had many experiences for think of being. She loves every person something we have to normal socialization and family life. who comes into her life. She has learn. Her physician Doris Trauner, M.D., endured surgeries, hospitalizations, N o w, I h a v e t o of the University of California San many drugs, blood tests and endless learn the final lesson of D i e g o , h a s p r ov i d e d e x c e l l e n t trips to the doctor. She must hate to letting go and allowing medical care. even see a hospital, yet she never her to die without pain Stacia has experienced the entire complains. She laughs and finds joy or suffering. She spectrum of TS. She is very in every day. recently looked at me developmentally disabled, autistic, I have learned to seek professional and told me “no more has sleep and behavior problems, advice often and to access resources hospitals.” Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 10 Comedy for a Cure Raises More Than $100,000 for TS Research On April 28, Comedy for a Cure Hobart, who also serves as a raised over $100,000 for the Tuberous board member for the TS Sclerosis Alliance’s research programs. Alliance. “Everyone in the The event, held at the Laugh Factory room, from the audience, to in Hollywood, was hosted by two- our celebrity hosts, to the time Emmy Award winner Patricia comics, all want to find a Heaton, and television/film star cure to end this disorder.” Jennifer Love Hewitt. Heaton and Hewitt’s T h e e ve n i n g f e a t u re d a l i ve involvement not only added auction followed by performances celebrity appeal to the from Laugh Factory comic regulars, evening, but they were i n c l u d i n g A n d y K i n d l e r, To m instrumental in raising the Patricia Heaton (left) and Jennifer Love Hewitt (right) Dreesen, Ron Pearson and Jimmy auction bids. Hewitt modeled Bro g a n . T h e i m p re s s i ve l i s t o f one item, a Rona Pfeiffer necklace, Damon Casatico, ser ving as auction items included a guitar and upped the ante by offering a kiss auctioneer for the evening, kept the signed by Bon Jovi’s Richie Sambora, to the highest bidder. The two later audience entertained and the auction breakfast with Larry King, and a competed for the winning bid on the p r i c e s r i s i n g . Hi s i n vo l ve m e n t Seabourn Spirit cr uise to both guitar signed by Sambora. Hewitt stemmed from his friendship with a Thailand and Vietnam. won with a bid of $4,000. TS family. “Nobody has commented Wi t h a p p r o x i m a t e l y 2 5 0 i n “It was amazing to be part of on the event without saying how attendance, the evening was a terrific such an incredible event. I was fabulous and hilarious he was and success and plans are underway to honored to host the event,” said what an important part of the make Comedy for a Cure an annual Heaton. After meeting Hobart’s son evening he was,” said Hobart of event. Event co-chairs Christy Hobart Ben, who has tuberous sclerosis Casatico. and Cece Yorke had the help of more (TS), Hewitt knew she “had to do The true dedication of those than 30 volunteers from the Los something to help him and everyone attending was seen when at the end Angeles area. with TS. The event was so much fun. of the auction, Casatico encouraged “I can’t imagine ever being able to Thanks for letting me be a part of the audience to raise their programs top the enthusiasm and love that it.” Both celebrities have generously and commit to a donation of $100. filled the Laugh Factory during our offered their support of future TS Arms clutching programs shot up first Comedy for a Cure,” said Alliance activities. across the room. My other children and I will learn to her doctors. She has allowed me to about being a parent, a sibling, a how to grieve again and to cope share her story with many of my relative, or a person with TS is ever without Stacia in our lives. We are students over the years in regular easy. There will be much laughter and planning her funeral to be a education who are now teachers, more tears. Take it one day at a time, celebration of her life. We are donating doctors, social workers and others and don’t forget to laugh as much as her tissue and organs for research so who will remember that the disabled you cry! that her life will have had even more of are loved, important and have much a purpose. I am having my other to contribute. children tested for TS with Stacia’s I hope that my story does not DNA, which must be done while she make you sad about your child with is still alive. I am very thankful to the TS, but hopeful that in life or death Susan (Diaz) McBrine serves as part of the TS Alliance for funding this. your family can also say that your Alumni Ambassador Group. You can contact Stacia has affected many people’s child was here for a reason and taught her at email@example.com or call lives for the better. She taught bravery us all to be better people. Nothing (760) 482-0891. 11 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e LISTEN TO OUR VOICES By Linda Creighton, MSW, LCSW-C T here are 36.1 million citizenship, and the rights of a friends and professionals that disabled Americans (nearly citizen; the idea of inclusion in embrace the philosophy of weaving 15 percent of the total c o m m u n i t y ; o f control, choice, diversity into the fabric of a American population) who desire no freedom and opportunity. community to meet the needs of all more from life than their non- One of the principal strategies to individuals. The reality of a vision disabled brothers and sisters. enable people with disabilities to may far exceed anything ever thought Individuals with disabilities rely on achieve self-determination is through possible, but it will take a lot of work their families and the community legislation and national policy. It is and a strong commitment. just like non-disabled people. important to recognize that this does “Circle of Inclusion” is an example The Americans with Disabilities not apply to only laws and policies, of a vision, and below is a list of only a Act of 1990 (ADA) is the federal civil which are specifically focused on their few of its essential components, which rights statute protecting the rights of rights and requirements. Policies includes needs and desires of the individuals with disabilities in the must be designed and implemented individuals who will be affected by the U.S. Under the ADA, an individual to ensure the inclusion of those who action plan. The consumers, families with a disability is a person who 1) may be at the risk of exclusion on the and other invested participants should has a physical or mental impairment basis of ethnicity, culture, race or want the following for the adults with that substantially limits one or more disability. Funding must be grounded disabilities who desire to live in the major life activities; 2) has a record of in the principles of human rights and community: such an impairment; or 3) is regarded social justice. as having such impairment. Self-determination is allowing the Circle of inclusion: Since the enactment of ADA, ones receiving services, both the a. C o m m u n i t y i n t e g r a t i o n ( i . e . individuals with disabilities have funding and the authority to determine independent living, accessibility) grown from a small band struggling how to live their lives. It means that b.A continuum of care and service for simple rights to a significant the budget will be developed with delivery without interruptions (24/7) political force shaping the future of responsible choices as to how the plan c. Knowledgeable, caring staff disability legislation and policy. Their of inclusion will be enacted. d.Self-determination, human rights united voices will continue to echo and personal dignity the need for change, which includes e. Accessible and safe housing political, attitudinal, financial and Uniting to Make a f. Transportation for medical, social regulatory environments that are Vision and a and vocational programs and/or shaped to support their rights. Commitment an Action employment If we listen to their voices, we will There are a lot of well meaning hear those affected with disabilities people, including family members, The vision and plan needs to be say that they are individuals who professionals and organizations, who clearly defined and agreed upon by want to live, work, play, worship and are dedicated to improving the the participants before you can begin participate in community activities of quality of life for the disabled. There to implement further steps. their choosing. They want to be given are politicians that together exchange the opportunity and support to ideas and pass laws that may affect explore options and freedom to make those with disabilities. But, a vision Independent Living their own choices when possible. and a commitment to improve life for A component of the circle of those who are disabled will only inclusion for many individuals with become an action when the action has disabilities may be independent living. The Definition of Self- a plan with concrete steps. The Social Work Dictionary defines Determination and the One of the first steps is to identify independent living as “the ability to be Politics of Inclusion the vision. A vision will take self-governing and self-sustaining.” The word self-determination is collaboration and partnerships with This is often accomplished for the broad enough to carry a variety of organizations and agencies, individual with disabilities within a important ideas. These ideas include passionate families and dedicated supportive service network that Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 12 provides protection while maximizing forms against people with disabilities. have embraced them by the legislation independence for the individual. Discrimination has taken the form of passed into laws, the jobs offered to Ask anyone in the independent preventing qualified applicants from them, accessibility to public buildings, living community to list the top three obtaining a job that they were the neighborhoods they live in, and problems facing people with qualified for, or kept those with the home and community programs disabilities today, and there is a good mobility impairment from gaining that are offered to them. chance the response will include access to transportation and To read more about ADA law, insufficient housing, unsafe locations buildings. Often individuals with home and community-based services, and inaccessibility. disabilities felt deprived of their go to http://spot.pcc.edu/osd/adalaw.htm Resolving the housing problem is liberty and dignity. However, their and www.ilru.org/olmstead/publication crucial to advancing independence voices will not go unheard as we move /publications.htm. Also, look for the for people with disabilities. Until this into the next century. Tu b e r o u s S c l e r o s i s A l l i a n c e ’s most basic need is met, it is nearly Individuals affected with announcement of the Adult Life impossible for a person with a disabilities will know their voices are Stages Guide, which will list many of disability to move on to other things heard when we embrace and accept the state and federal resources relating that contribute to an independent, their diversity. They will know we to community living productive and satisfying life. Independent living is more than a social movement, it a paradigm that is The Voices of the Disabled Listen to our voices when we resources. We believe that service reshaping the thinking of disability professionals, organizations and challenge your assumptions about planners who know us best are in a government programs. In the 1973 what we can do and how we should better position to facilitate life- Rehabilitation Act, Section 504 live. We want the focus to be on the defining choices than administrators outlines the civil rights aspects of the quality of life, equality and freedom to who rarely see us. But we do want to act and prohibits discrimination make our own choices. Slowly we are be assured that state and federal against “qualified handicapped shedding the passive role and agencies will safeguard equitable access individuals” under any program or beginning to present ourselves as to supports and funding. We ask that activity receiving federal financial consumers who have control, choices, key players cooperate, coordinate and assistance. freedom and opportunities. It is now collaborate. There are also barriers that need be unacceptable for a state or local agency Each of us should not only receive examined before a circle of inclusion to make decisions for us. the benefits of community life and can be completely accomplished. In the past we often had limited opportunities, but also be a part of the Instead of attempting to address the choices about where and with whom fabric of relationships that forms the barriers, below are some of the steps we lived and who provided our c o m m u n i t y. L i f e m a y o f f e r necessary to fulfill the vision of support. We now ask to be given unprecedented opportunities to live, independent living for adults with choices and have control over the work, worship, play and participate in disabilities. Any program that is going decisions when possible. In all things, the community. to be developed may want to consider we ask that decisions about our lives be We, along with our families and the following outline: made as close as possible to our needs. communities, are capable of naming If we are unable to make the decision, and solving our own issues, defining a. establish a vision then we request that our families and our needs and describing our desires b.identify the need invested professionals make the for the future. If public money is spent c. develop an action plan to meet the need decisions. We ask that you provide us on behalf of us, it must be with our d.implement the plan with a continuum of services and consent and active participation. We e. evaluate the plan resources so that we may co-exist in refuse to be treated like a commodity f. determine future changes and the community like our brothers and rather than participants in our own needs to the existing plan sisters. lives. Give us the same dignity you give We prefer for local organizations, our non-disabled friends. rather than state agencies or large The Future corporations, to be working with us Linda Creighton, M.S.W., L.C.S.W.-C., is Throughout history, society has and our families to define the program manager for advocacy and outreach accepted discrimination in various presenting concerns, priorities and at the Tuberous Sclerosis Alliance. 13 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e Kayla Trundle Special Events raised funds through a bowl-a-thon for Andrew. outstanding efforts to raise public awareness and funds for TS Alliance programs. Food and Wine Tasting Events Raise Significant Revenue Annual Shrub Sale for TS Alliance Raises $130,000 for TS The Tuberous Sclerosis Alliance On May 25, the 16th Annual (TS Alliance) held its first Food & Charity Shrub Sale held at Conard- Wine Tasting event in Washington, A Bowl-A-Thon for Pyle’s Rose Barn in Jennersville, D.C. on March 21. This inaugural Andrew Pennsylvania raised $130,000 for TS event afforded attendees the oppor- Kayla Trundle, a 14-year-old from Alliance programs and research efforts. tunity to sample the work of the finest Swartz Creek, Michigan, organized a Event coordinators Burt and Sue chefs from the Washington, D.C., bowl-a-thon to support the Tuberous Goodrich started the event in 1985 Metropolitan Area as well as wines Sclerosis Alliance, in honor of her 11- when their daughter Colleen was born specially selected to complement the year-old brother Andrew, who suffers with tuberous sclerosis. evening’s cuisine. from tuberous sclerosis. Kayla and her The Conard-Pyle Company and The location for the event was the friend Rachel Scott recruited about 30 Steve Hutton, president of the local downtown Postal Square Building students to help them develop nursery, have been instrumental in the providing an atmosphere appropriately promotional posters and solicit local success and growth of the event. For rich in history and elegance. Jack Ford, businesses for support. many years they have generously formerly of ABC News’ 20/20, and “I don’t want to just raise money. I donated more than three-quarters of Greta Van Susteren, former host of want people to know about TS,” Kayla the plants sold. This year a new rose CNN’s The Point and the newest said. Kevin Klaeren, principal of hybrid, the Colleen Mary rose named addition to the Fox News Channel team Swartz Creek Middle School, said it’s in honor of the Goodrich’s daughter, with On the Record, served as honorary fairly rare for students to initiate such was premiered. The red hybrid tea chairpersons. The event sold out with efforts. “She’s been very persistent and rose will be available for purchase in approximately 300 in attendance and mature about it.” The event was 2003 and for each sold, Conard-Pyle raised more than $50,000 net for TS successful in raising $3,000 for the TS will donate $1 to the TS Alliance. Alliance research and programs. Alliance. “Last weekend proved that a small One of the evening’s highlights was For Kayla, drawing attention to the group of committed people can make t h e p re s e n t a t i o n o f t h e f i r s t TS disorder won’t end with the bowl-a- a terrific impact when they work A l l i a n c e “ C h a m p i o n Aw a r d ” t o thon. She and her family hope to together,” said Becky Bull, vice president Congresswoman Sue Kelly of New continue spreading the word in other of development and communications York in honor of her efforts for raising ways. at the TS Alliance. “The dedication congressional awareness and support F o r K a y l a’s c o m m i t m e n t t o and hard work put forth by Burt and for tuberous sclerosis (TS) research supporting the mission of the TS Sue Goodrich, along with the support through her work introducing and Alliance, the organization has honored of Conard-Pyle and the 60 volunteers promoting the passage of House her with the TS Champion award, serves as an inspiration to all whose Concurrent Resolution 25 (H.CON. presented in recognition of Kayla’s lives have been affected by TS.” RES.25) in February of 2001. Though this was the first food and wine tasting event held in Washington, D.C., the TS Alliance has a long history JoEllen West organized a of similar events. Andrew Bott, member musical benefit in honor of the TS Alliance Board of Directors, of her son Davis at the and his wife Mary have been organizing O.C. Jamboree in Ocean the Garden State Food and Wine C i t y, Ma r y l a n d . T h e Tasting event in their home state of benefit raised $3,000 with New Jersey for almost a decade. The 9th the support of the local Annual Garden State Food and Wine community. The guests Tasting was held in February of 2001. were treated to a musical The February event netted $100,000 v a r i e t y s h o w, s i l e n t with more than 400 in attendance. A auction and hors special thank you is extended to both d’oeuvres. Thank you to Andy and Mary for organizing both JoEllen and her family for events to benefit the TS Alliance. The West Family: Cameron, Shannon, Gary, Jo Ellen and Davis organizing this event. Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 14 Volunteers across the country organize October 3 Step Forward to Cure Tuberous events to benefit the TS Alliance. TS Alliance of Orange County’s Golf Sclerosis was held at PEASE Inter- Below is a listing of special events that Classic national Port Authority in Portsmouth, you may want to participate in. For Black Gold Golf Club New Hampshire on a sunny May 26. more information, please call the Yorba Linda, California Many thanks to Travis Allen for his listed contact person to see how you Contact Lee Ann Addison: incredible leadership, Tom Gwinn for can become involved. (949) 495-7126 heading up corporate sponsorships, Tracey Hutchinson for developing walk materials and support of the Step Forward to Cure event and the entire New England Tour of Tuberous Sclerosis Community Alliance. Champions Golf Volunteers are also organizing walks Tournemant in their local communities to raise Schedule a w a re n e s s a n d f u n d s . I f y o u a re interested in organizing one, please call July 22 Becky Bull at (800) 225-6872. TS Charity Golf Scramble Shaker Run Country Club September 14 Cincinnati, Ohio Busse Woods Forest Preserve Contact Doug Loftus: The TS Alliance has developed a Elk Grove, Illinois (513) 554-6000 or (800) 541-2950 logo and planning manual for walk-a- Contact Jenny Smiley: thons. Walk-a-thons are a great way to (630) 872-0189 August 1 increase awareness of TS and raise Courtney Leigh Small Steps Golf much needed funds for TS Alliance September 29 Tournament programs and research efforts. For Downtown Saline Knoll West Country Club those interested in learning more about Saline, Michigan Parsippany, New Jersey planning or participating in a walk-a- Contact Nancy Carter: Contact Frank Gallagher: thon visit the TS Alliance Web site at (734) 663-5623 (973) 267-5511 www.tsalliance.org The TS Alliance of New England October 6 August 19 successfully piloted Step Forward to Marlboro Township Recreation Center PMA Caddy Shack Golf Tournament Cure Tuberous Sclerosis. As the first Marlboro, New Jersey Whitney Farms Country Club walk-a-thon nationwide, members of Contact Celia Mastbaum: Monroe, Connecticut the New England Community Alliance (732) 492-5940 / firstname.lastname@example.org Contact Angelo Vakos: enthusiastically set the standard for (203) 348-3370 others planning walks across the country. Seventy-five individuals August 23 helped raise more than $23,000. Six-year-old Brandon Hargreaves (diagnosed with TSC at eleven months old) with his Mother, Maria L. Anderson Charity Golf Classic Lisa Hargreaves, at the half-way point of the TS Fairfax National Country Club Alliance of New England Walk for a Cure 5K Centreville, Virginia Walk-A-Thon. Contact Bud Anderson: (703) 425-0921 Summer 2002 Utah Cup Golf Tournament Salt Lake City, Utah Contact Rob Thurston: (801) 765-4417 September 30 Emmory Regan Shapses Golf Classic Old Westbury Golf & Country Club Old Westbury, New York Contact Marc Shapses: (212) 326-8678 15 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e GRANDPARENT’S VOICE W E L C O M E S I M P LY TA L K I N G were not sure if he would be blessed By Barbara Klein, a grandparent from the with speech. When he was younger, the Boston area and member of the TS Alliance prognosis was poor that he would ever of New England have the ability to talk in full sentences. Today, our hope has become a reality I am very fortunate to live close to due to his self-motivation, his devoted, my eldest daughter and her family: loving parents and some very caring Elysa, Tom and their children, Robbie, a speech therapists. 5-year-old with TS, and Brad (2). As a I know that the strength, intelligence semi-permanent fixture in their house- and courage my grandson has exhibited hold, my role is one of nurturing, in his short five years will continue to supporting and bonding with my grand- be his steady companion throughout It is always neat to know how other children. We spend lots of time together, his journey. I hope that the gift of grandparents touch the lives of their whether it is reading a story, singing silly laughter will also always accompany very special grandchildren. In this issue, songs, hunting for bugs, dancing around him along the way. one grandmother’s letter comes alive the room or just laughing and talking. Barbara Klein and Robbie with love as she relates her feelings of One of my favorite things to do great joy and gratitude. What beautiful with Robbie is to simply talk with him. times she and her grandson share, and Sometimes the conversation evolves what a huge gift this is to both them and their whole family. around his favorite fairytale characters. Read, too, about a granddad who Other times he tells me about the gold has joined the popular “Tour of finch or cardinal he has just seen land at Champions” by hosting a golf event. the bird feeder outside the kitchen What a marvelous way to transfer window. love, concern and energy into You see, talking with Robbie is very tuberous sclerosis (TS) awareness and special because there was a time that we to raise significant funds directed to progress and expanded hope. Yes, you grandparents have been busy! You have participated in this year’s STAMP OUT TS letter-writing G OLFING FOR A C URE I decided I could help in raising campaign. You are signed onto the By Bill Brown, a grandparent from Florida funds by organizing a golf tournament. annual Gift-Wrap Campaign. You are People began introducing me to others advocating support of TS research via My grandson Matthew (Matt) was who they felt might be your government representatives. You diagnosed with TS at the age of 4 during able to help. We formed have downloaded a software program an eye exam. The ophthalmologist a committee and that actually allows TS scientific noticed characteristic lesions on his retinas. decided to call our fund research to take place whenever your After consultation with a dermatologist, raiser “ The Golfer’s computers are on. And the list goes on of amazing, heartwarming stuff! the diagnosis was confirmed. Charity Tournament” to As grandparents, we may be Matt is now 19 years old. Although benefit the Tuberous different in lots of way, but our he has never had a seizure, he does have Sclerosis Alliance. common bond is our strong love of tubers and a giant cell tumor in his T h i s y e a r, w e family and our desire to minimize the brain. Matt also has tumors in his anticipate having 80 to challenges that TS imposes. Love does kidneys. He graduated from high school 100 golfers. If you work wonders! two years ago and has been employed in would like to learn various positions, but has suffered from more about this golf depression for years and has always had tournament, please Please send me your questions, behavior and socialization problems. contact Bill by calling comments, suggestions and stories to: Most people I talked with had never (904) 291-8987 or Shonnie Johnson heard of TS, so it was important for me send an e-mail to 11776 Stratford House Place to learn as much as I could about it. It email@example.com. Unit 1309 was while attending the Tuberous Reston, VA 20190 Sclerosis Convention in 1999 that I Phone: (703) 456-0248 learned more about this condition Bill Brown (top) and his Fax: (703) 456-0221 E-mail: firstname.lastname@example.org affecting my grandson. grandson Matthew Graduate With TS Sparks Endowment Donation to Endowment Fund Fund Chair With her proud family Report Mark Hyman, M.D. in attendance, Lauren Krinsky graduated on May 10, 2002, from t h e Un i ve r s i t y o f Southern California Y ou may recall that in past columns I have highlighted some of the ways people can give to the Tuberous Sclerosis Alliance (TS Alliance). In the with a B.A. in English. last issue (Spring 2002) I discussed annuities, which Lauren, who was began with estate planning. As I mentioned, in most diagnosed with cases people plan giving throughout their lifetime. tuberous sclerosis (TS) However, expectancies allow planning after a donor at the age of 14, is one has passed away. While this is a sensitive topic, many of the lucky individuals who is mildly afflicted with minor people will find this information to be quite helpful. skin manifestations and a few brain lesions. Basically, an expectancy is when a person To honor Lauren’s accomplishments, last year her parents commits to giving a donation after settling all the David and Cathy Krinsky established the Lauren E. Krinsky affairs of their estate. For instance, if you die, a Fund as part of the Tuberous Sclerosis Alliance (TS Alliance) person you previously designated, a decedent, takes Endowment Fund with a donation of $25,000. This year over the estate and carries out your wishes. They sell Cathy, a director on the endowment fund board, was able to whatever assets you still have, such as a house or secure a generous donation from David’s law firm stock. The decedent then gives whatever you asked to O’Melveny & Myers, LLP, that more than doubled the be donated to the recipients of your choice, such as endowed fund. Thank you O'Melveny & Myers! your children or grandchildren. Lauren’s other family members have joined in supporting A problem arises when your estate is larger than the TS Alliance, including her grandmother Jean Meredith, the limits placed by the government. In other words, who raised more than $3,000 last year in the STAMP OUT while you can give to a spouse in an unlimited TS letter-writing campaign. And Lauren’s grandfather Peter manner, the government will limit gifts to others. Meredith donated a similar amount as a tribute to her. While you can give above the limit to family, the The Krinsky family encourages other families to donate government taxes it quite heavily, usually over 50 to the endowment fund. Money is needed to continue percent. research towards finding a cure, as well as to provide support In response, many people decide to limit the services for those already affected. amount they give to family and friends so that the “A donation to the endowment fund is a gift that keeps government will not get any of their money. They on giving. As the endowment grows over time through would rather have a charity benefit from the money. donations and investments, the yearly donation from Through an expectancy, you can document in your generated interest from the endowment to the TS Alliance will a designated amount that will go to a charity. It general operating fund will grow, providing funding for could be a percentage of money, a flat amount, an both critical needs and exciting opportunities. And in our asset that is sold or an insurance policy. This latter lives, there is nothing more important than supporting the option is quite common. People will buy insurance goals of TS Alliance," says Cathy. “Together, we can make and the policy pays out when they pass away. a difference.” Many individuals have donated to the TS Alliance through this means. They will buy the policy and designate our organization as the beneficiary. Or, Endowment Fund Giving Update the donor may ask that some of the money go to cover taxes and that the remainder comes to us. The The Tuberous Sclerosis Alliance Endowment Fund is TS Alliance Endowment Fund currently has pleased to announce its second donation to the TS expectancies near $10 million. If yo u a re i n t e re s t e d i n d o n a t i n g t o o u r Alliance of $25,000 for the 2002-03 fiscal year. Under organization through an expectancy or any other close management, the endowment fund remains valued means, feel free to contact Becky Bull, vice president at nearly $1.2 million. Thank you, as always, for your of development and communications, at (800) 225- continued support. We guard it wisely. 6872 or by e-mail at email@example.com. 17 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e Community Alliances: Join Our Movement C ommunity Alliances provide a local connection for individuals across the country to join the mittee is working on the establish- ment of a coordinated care clinic in Atlanta. Polly Hyatt has graciously Tuberous Sclerosis Alliance (TS agreed to chair the alliance, while Alliance) movement and to get Patrick Schulte is serving as the vice involved. The volunteer committees chair and facilitator of the Support host community gatherings and Ne t w o rk . Re i k o Do n a t o i s t h e support groups, plan community coordinator of outreach and fund raisers and increase the awareness; Lynn Johns is chair of the It is just the beginning for the New England awareness of tuberous sclerosis (TS) STAMP OUT TS letter-writing Community Alliance team as they hold their in their local community. Below are campaign; Heidi Sprinkle is co- first meeting. Pictured here are the alliance leaders (left to right): Tracey Hutchinson, Elysa some highlights of upcoming coordinator of the Community Seymour, Silvana Flynn, Jeffrey Hargreaves and activities and opportunities for you Fund-Raising Committee; Debbie Tom Gwinn. Not pictured: Travis Allen. to get involved. Po u l o s i s t h e c o m m u n i c a t i o n s We are pleased to introduce coordinator; and Chris and Jay Network; Jeffrey Hargreaves is volunteer leaders and future Jo h n s o n a r e p r o g r a m / s p e a k e r coordinator for outreach and activities of our four newly formed coordinators. awareness; and Travis Allen and Tom Community Alliances: Gwinn are co-coordinators of TS Alliance of Metro New York is Community Fund-Raising. Jeffrey TS Alliance of Central New Jersey is planning quarterly support group Hargreaves recently ran the Boston currently seeking a chair to lead their meetings with speakers beginning in Marathon in honor of his son activities. Robin Williams has agreed September, and family events in Brandon and friend Rachel Corbett to be the coordinator for outreach December and June 2003. Volunteers to raise awareness of TS. and awareness. Celia Mastbaum is will also be working on the return of chairing Step For ward to Cure the NYC Comedy for a Cure co- Tuberous Sclerosis, a five-mile walk- chaired by Francine Ostrow and Liz Upcoming Events and a-thon to be held on October 6. Buchsbaum. Francine has also agreed Activities Other planned activities include to serve as chair of the alliance. Lucy informational community gatherings Albers is vice chair; Allison Peckham TS Alliance of Dallas/Ft. Worth with speakers in early November is the facilitator of the Support Area is holding a potluck com- 2002 and March 2003, as well as a Ne t w o r k ; a n d Pe g g y a n d To m m u n i t y l u n c h o n Ju l y 2 0 a n d family picnic in May 2003. Lindsey are co-coordinators of informational community gatherings Community Fund-Raising. in September and March. For more TS Alliance of Greater Atlanta is information, contact Maria Cole at planning a family picnic in July, TS Alliance of New England is firstname.lastname@example.org. support group meetings in September planning quarterly informational and November 2002, and February community gatherings with speakers. TS A l l i a n c e o f Me t ro D . C . i s a n d Ma y 2 0 0 3 , The next gathering is scheduled for planning a July family picnic and with featured September 29 at Massachusetts support group meetings with speakers speakers. An General Hospital, featuring an in September 2002, and January, outreach com- update on the Scientific Conference April and June 2003. For more by Elizabeth Thiele, M.D., Ph.D. information, contact Donna Banks at The Atlanta/N. Georgia The alliance’s spring walk-a-thon email@example.com. Community Alliance raised $23,000 to date. Two family comes together for an organizational meeting. events per year are also being TS Alliance of Northern California Pictured here are (left to planned. Elysa Seymour is serving as is hosting a family picnic and garage right ) Al ex Don a t o, the first chair of the alliance. Tracey sale in August. Additional Reiko Donato, Heidi Sprinkle, and Heidi’s Hutchinson is the vice chair; Silvana community gatherings will be held in son Hampton. Flynn is facilitator of the Support October, and April and June 2003. Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 18 For more information, contact Diane TBA. For more information, contact • TS Alliance of Los Angeles on July 21 Burgis at (510) 538-0544 or Colleen Shana Riley at firstname.lastname@example.org. (1 to 3 p.m.), hosted by Christy Hobart. Schleich at email@example.com. TS Alliance of the Upper Midwest • TS Alliance of Tulsa on August 4 TS Alliance of Orange County is planning four informational (2 to 4 p.m.), hosted by April Bennett. continues to hold monthly support community gatherings with speakers group and business meetings the first in September and November 2002, • TS Alliance of Pittsburgh in Monday of each month. The Golf and February and April 2003. For October 2002. Classic is being held on October 3 at more information, contact Laura Black Gold Golf Course. If you are Palmer at firstname.lastname@example.org or • TS Alliance of Chicagoland on interested in participating in the Golf Sherri Trapp at email@example.com. October 20 (2 to 4 p.m.), hosted by Classic or for more information on Lori Iverson. the monthly meetings, contact April For more updates on Community Cooper at Acoope@Ardenrealty.com Alliance meetings and local activities, • TS Alliance of Phoenix/Tucson on or Lee Ann Addison at (949) 495- please visit the TS Alliance Web site November 3 (1to 3 p.m.), hosted by Denise 7126 or firstname.lastname@example.org. at www.tsalliance.org and click on Hess, Debora Moritz and Kim Svob. “Community Alliances”. TS Alliance of the Rocky Mountain If you are interested in helping Region hosts monthly support group organize any of the meetings, and business meetings the third New Alliances Being volunteering in the alliance or serving Saturday of each month at Denver Formed in a leadership role, please contact Children’s Hospital, noon to 2:30 Summer and fall meetings are Kari Carlson, director of community p.m. On July 20, there will be a being planned for the formation of alliances, at (800) 225-6872 x 22 or send family potluck gathering, location new alliances. These include: an e-mail to email@example.com. Four Who Made a Difference I t started very simply. Four mothers came together with a commitment to provide local support for families have actively par ticipated in the National Outreach and Awareness Campaign, distributing up-to-date facing tuberous sclerosis (TS) and to raise information on TS to medical awareness in their local community professionals. The fabulous four creators of the TS Alliance of –very similar to the formation of the By the summer of 2001, the TS Orange County and their current team. Top Tuberous Sclerosis Alliance (TS Alliance). Alliance of Orange County hosted their r ow : Ap r i l C o o p e r, Sh e r i Jo n e s , Je a n n e Whitaker, Tiffani Goff (Jeanne’s daughter), and In this case it was Lee Ann Addison, April first annual Southern California TS K a t h y R o s e n a u . B o t t o m R o w : He a t h e r Cooper, Tiffani Goff and Sheri Jones. family picnic. The second annual Whitaker (Tiffani's sister) and Lee Ann Addison Their first meeting was in February family picnic is planned for July 28 (Kathy’s sister). 2000. Lee Ann and Jim Addison hosted (12:30 to 3 p.m.) at Doheny State Park Club in Yorba Linda, California. The seven families at their home for a in Dana Point. goal of the event is to increase awareness luncheon. After this first meeting, the Together with other parents in Los of the disorder while raising crucial four mothers came together and said, Angeles, this group is working to funds to support research towards “We need to do more.” This was the establish a TS coordinated care clinic. finding a cure and programs to support beginning of the TS Alliance of Orange The clinic will be available to families families dealing with the day-to-day County (CA). throughout the region and provide challenges of TS. Scott Clarkson chairs Their community outreach began services from medical professionals the event, and seven other local families in the summer of 2000 with monthly s p e c i a l i z i n g i n t h e d i f f e r e n t TS are involved in the planning. support meetings. These monthly manifestations. Through the combined efforts of gatherings continue today. That fall Now this expanding Community these local activities, the TS community they initiated a letter-writing campaign Alliance is engaging in what will in Orange County has created first- that raised more than $30,000 and held become a major annual fund-raising time connections between individuals a TS awareness fundraiser at a local event in Orange County. The TS and families facing TS. And it all restaurant to meet and educate more Alliance of Orange County Golf Classic started with four individuals saying, families and friends. And, this year they is October 3 at the Black Gold Golf “Let’s do more.” 19 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e Finding Homes for Adults with TS T here are more residential options a n d re l a t e d s u p p o r t s e r v i c e s available to adults with disabilities than also live at the home during the week and visit their families on weekends. • Supervised Apartments enable an • Fi n a n c i a l S o l ve n c y – C o m p a re providers’ financial stability before making your final selection. Is it well managed? ever before. individual to live in an apartment with The first step that individuals with minimal assistance, possibly with a Before making the final selection, tuberous sclerosis (TS) and their roommate or alone. This choice may visit the programs and talk with the families need to take is to educate work well for individuals who prefer to management team, staff, and themselves about the residential live with fewer people, but still require consumers who receive their services. programs available in their community. some assistance. Often, a supervised Also be sure that the person with TS, If the individual with TS is a apartment setting can prepare an appropriate family members and other school-aged child or young adult who individual who wants to move to a advocates (case managers, counselors, may need support with housing as an more independent living arrangement etc.) meet with the team to discuss the adult, it is never too early to begin this in the future. needs and expectations of the adult search. Many programs have long • Respite Care for adults with TS can who will be receiving services. When waiting lists, so the sooner an provide a much-needed break for the services to be provided are agreed appropriate living arrangement is family members and/or other upon, get it in writing with signatures. identified, the better. Programs will caregivers. Programs may range from vary greatly by geographic area. The providing a substitute caregiver for a Getting Started programs described below may or may few hours each week to temporarily The agencies and resources listed not be available in your city or town. placing the individual in a special below can provide more information respite home for a specified period of about selecting an appropriate living Types of Residential time. Two useful resources are The arrangement and where to find Programs National Respite Locator Service at residential programs in your When searching for a residential (888) 671-2594 or www.chtop.com/ community. program, the goal should be to locate a locator.htm and The Epilepsy Foundation • Local chapters of national advocacy situation that provides the assistance at (800) 332-1000 / www.efa.org. groups, such as The Arc or United and support an individual needs, while Cerebral Palsy. Check local phone simultaneously providing an What to Look For listings for contact information. opportunity for him or her to be as When Selecting a • How to Choose a Provider–A Guide independent and self-sufficient as Residential Program From CARF, published by the possible. Be sure to investigate any Once a program or programs have Commission on Accreditation of program before making a final choice. been identified that might be a good Rehabilitation Facilities (CARF), this So m e e x a m p l e s o f t h e p r o g r a m s match for the adult with TS, be sure to guide provides a detailed list of questions frequently used by people with evaluate the following: to ask providers of services to persons disabilities are described below: • Philosophy–What is the agency’s with disabilities. Also available in • 24-Hour Care Homes and Nursing vision? Does the program empower Spanish. Contact CARF at (520) 325-1044 Facilities provide round-the-clock individuals to make their own decisions? or www.carf.org/CARF/Consumer.htm. supervision and assistance for all daily • Environment–Is it supportive? • The Arclink.org–Provides information living activities for individuals with • Programs Offered–Do the programs on home and community-based services. very severe disabilities. A psychological offered meet most of the individual’s Users can search by state, zip code and assessment and medical examination is requirements? the type of service provided. Click on required for placement. • Location–Is the program located “Provider Search” after entering the site: • Supervised Group Living or Group close to the person’s job or other day www.thearclink.org. E-mail: firstname.lastname@example.org. Homes are usually housed in a single activity? Is it near family and friends? • Independent Living Centers (ILCs) family home located in the community Is there access to public transportation? offer ser vices to help people live that serves several individuals with • Size & Staffing–Compare staff independently by assisting with access disabilities. Homes are staffed by ratios. Ask about staff wages, to housing and other social services. professionals who assist individuals benefits, training and turnover. Assistance may include independent based on their need, which may include • Human Rights/Abuse Records–Has living skills training, peer counseling, personal care skills, meal preparation the agency ever been cited for violations? and other services. To find the ILC in and housekeeping. Residents may go to The local chapter of The Arc or other y o u r s t a t e , v i s i t t h e i r We b s i t e : work or other day program and return disability groups can frequently share http://www.ilusa.com/links/ilcenters.htm. home at the end of the day. They may an agency’s history in this area. Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 20 Getting Involved, Making a Difference Matching Program T he Tuberous Sclerosis Alliance (TS Alliance) offers many oppor- tunities for individuals to participate Parents and individuals whose lives have been affected by TS are ations that will guide the future of programming for our constituents. The TS Alliance could not have in activities through the organization. often asked to make difficult completed this project without the Below are some ways that individuals decisions. Through the Matching incredible generosity of Consumer have recently been involved. Contact Program you can share your Insights and Dieter Tabs, Inc. Both the TS Alliance if you want to know personal knowledge with others on a companies donated considerable how you can participate. variety of subjects that include time and resources to create the a d vo c a c y, s u r g e r y, e d u c a t i o n a l analysis and report the findings and Outreach Committees rights, transitional topics, estate recommendations based on the This year, 16 volunteers served on planning, college scholarships and responses that were received. Thanks the four outreach ad hoc committees. employment. also to volunteer Reiko Donato for These committees helped develop the More than 70 constituents have her outstanding efforts. c o n s t i t u e n c y s u r v e y, c r e a t e a already accepted the invitation to behavioral/cognitive section for the participate in the Matching Program. List Serves Tuberous Sclerosis Journal, prepare a If you would like to know more about The TS Alliance now offers the professional education plan for the program, contact Linda Creighton opportunity to build our online outreach to medical professionals, at email@example.com or community through four list serves. and develop strategies for outreach to (800) 225-6872. Request an These forums provide a way for tuberous sclerosis (TS) clinics across application today! Someone is individuals to share their successes, the country. The commitment made waiting to talk to you about your challenges, resources and support. by these individuals is yet another personal experiences. List serves currently being offered by example of how volunteers can make the TS Alliance include: a difference through the TS Alliance. Constituency Survey The organization extends its sincere Thank you to all the individuals • TS Adults appreciation to the following that took the time to complete the TS • Parents and Caregivers individuals who devoted their time and Alliance constituency survey. Your • Parents of Teens Transitioning to talent this past year: Diane Burgis, par ticipation was impor tant in Adulthood April Cooper, Reiko Donato, Thistle understanding the needs of those • Grandparents Elias, Candace Erickson, M.D., David affected by tuberous sclerosis and Franz, M.D., Lori Iverson, Sue Kramer, how the TS Alliance services can If you have Internet based e-mail, R.N., Robin Krantz, R.N., Arien better assist you. Analysis from the you too can join a list serve. For a free Malec, Cecelia McCarton, M.D., surveys has been completed and the subscription, please visit the TS Debora Moritz, Jessica Parish, Francine TS Alliance Board of Directors is Alliance Web site at www.tsalliance.org Pearson, Mary Seward and Eric Stake. considering proposed recommend- and click on “Online Communities”. TS Drug Discovery Update: We Need You There are currently about 1,600 However, we need thousands w w w. t s a l l i a n c e . o r g . T h e re i s a people participating in tuberous more to participate in order to move headline on our home page about sclerosis drug discover y efforts research forward at a more rapid rate. how you can join this effort! It is through the Rothberg Institutes Participants, please encourage your simple, safe, and does not interfere "Community TSC." We want to family and friends to download the with your computer operations. As convey our appreciation to those program. If you are not currently always, we do recommend backing who have joined this effor t by participating, we need you! up your system prior to installing simply downloading the screensaver S i m p l y g o t o t h e Tu b e r o u s any new software program. program. S c l e r o s i s A l l i a n c e We b s i t e a t 21 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e Useful Resources Tuberous Sclerosis Alliance Staff contact Information Books Web Sites All TS Alliance staff members can be reached at the toll-free office number (800) 225-6872, or through their e- Title: From Emotions to Advocacy: Source: www.nmark.com/si/ or www.tsbvi.edu/ mail addresses. The Special Education Survival Outreach/seehear/fall97/sensory.htm Michael Coburn Guide Title: Sensory Integration in Children President and CEO Author: Wright, Peter W.D.; Abstract: Children with sensory problems often firstname.lastname@example.org Wright, Darr Pamela are either hyper-reactive or unresponsive to their Vicky Whittemore, Ph.D. Source: Harbor House Law environment. These Web sites offers insight, Director, Center Without Walls and Press, Inc.: Hartfield, VA 23071. suggestions and understanding about sensory Senior Science Advisor email@example.com To order, call (804) 758-8400. integration. Abstract: This practical, user- Becky Bull friendly book includes strategies, Source: www.lindamoodbell.com Vice President of Development and Communications tips, references and Internet resources Title: Lindamood-Bell Learning Processes Fund-raising programs, major gifts, pertaining to special education. Abstract: Lindamood-Bell is an organization special events, membership and dedicated to enhancing human learning. The volunteer program firstname.lastname@example.org Title: Seeing Stars: Symbol Imagery educational programs stimulate basic sensory for Phonemic Awareness, Sight Words f u n c t i o n s re l a t e d t o l e a r n i n g . C e n t e r s Kari Luther Carlson & Spelling throughout the U.S. offer one-on-one Director of Community Alliances Volunteer committee development Author: Bell, Nanci instructional programs. Call (800) 300-1818 to and major gift fund raising Source: Gander Publishing: 416 locate a center close to you. email@example.com, alternate Higuera Street, San Luis Obispo, phone: (763) 434-3455 CA 93401. To order call (800) Source: www.wemove.org/kidsmove/ Linda Creighton, M.S.W., 554-1819 or (805) 541-3836. Title: Kids Move L.C.S.W.-C. Program Manager, Advocacy and Abstract: The book gives theory Abstract: Millions of children have difficulty Outreach and specific steps to teach you a controlling their body movement. This Web site Patient and family advocacy and support new program about symbols, is devoted to pediatric movement disorders. It firstname.lastname@example.org phonemics, sight words and spelling. offers information for parents and health care Cheryl Dunigan, Ph.D. professionals about the recognition, assessment, Vice President of Scientific Affairs treatment and avenues of support for those who Provide direction and coordination of scientific activities Journals are concerned with childhood movement email@example.com disorders. Title: The Journal of The Association Nicole Engdahl Director of Donor Relations for Persons With Severe Handicaps Development, major gifts, annual (JASH) campaigns Source: The Association for Free Special Education firstname.lastname@example.org Persons With Severe Handicaps: E-Mail Newsletters Jackie Heimbuch 29 W. Susquehanna Avenue, Suite Controller Finance and risk management 210, Baltimore, MD 21204. For Source: www.edweek.org/info-epe/eupdate.htm email@example.com a subscription, call (410) 828- Title: Education Week 8274 or write to the above Abstract: Weekly newsletters for teachers, Tiffany Jones Development Assistant address. administrators, policymakers, parents or anyone General inquiries and requests Abstract: JASH is a quarterly seeking updates on educational issues. firstname.lastname@example.org journal that publishes abstracts from The Holly Knorr Journal of Education, Exceptional Child Source: www.feat.org/FEATNews Director of Medical and Scientific Education Resources, Social & Behavioral Title: Families for Early Autism Treatment Alliances Sciences, PsycINFO & PsycALERT, Psychological (FEAT) Daily Newsletter Grants administration, tissue donation program and professional education Abstracts and others. Abstract: The newsletter offers up-to-date email@example.com information about recognition, assessment and Title: Focus on Alternative & treatment options for autism. Marybeth Leongini Director of Communications Complementary Therapies (FACT): Publications, media relations, An Evidence-Based Approach Source: www.getreadytoread.org/index.html communications and Web development Source: Pharmaceutical Press Title: Get Ready to Read, a program of the firstname.lastname@example.org (PhP): 1 Lambeth High Street, National Center for Learning Disabilities London SE 1 7JN, UK. For a Abstract: Free newsletters offering suggestions Rachel Loock Program Coordinator subscription, call 44(0)1491 829 and tools to help children get ready to read. “Life Stages Guide Program,” state and 272, e-mail: email@example.com or national resource identification write to PhP, P.O. Box 151, firstname.lastname@example.org Wallingford, Oxon OX10 Linda Rogers 8QU, UK. Executive Assistant to the President Abstract: FACT is a quarterly journal that Administrative support to board of directors and president explores alternative and complementary therapies. email@example.com Tu b e r o u s S c l e r o s i s A l l i a n c e PERSPECTIVE 22 Coming Up… Memorials (January 31, 2002 – May 31, 2002) Adult Teleconferences Contributions are given to the Tuberous Sclerosis Alliance at the request of family members in memory of their loved ones. We extend our sympathies to the This Fall The Tuberous Sclerosis Alliance ( TS family and friends of those memorialized below. These generous contributions Alliance) is offering teleconferences for support the progress of our mission to find a cure for tuberous sclerosis. adults with tuberous sclerosis (TS) this fall. Maria Anderson Joseph Holubowicz Else Pearlman To find out more about this exciting Elsie Barbknecht Joseph Hovaniak Kristin Porch opportunity, contact Linda Creighton, William P. Burke Carl E. Jensen Lucille Purcell program manager for outreach and Mariquita Cohen Margaret Johnson Fleta G. Rollins awareness, at firstname.lastname@example.org Marilyn Collins Ogden Johnson Glenn Rolston or call (800) 225-6872. Those who will be Marjorie Cook Richard Koch David Ruskin participating will be given a toll-free number William P. Corcoran Staten E. Laseter Burton Schatz and code to access the teleconference. William Corse Jeanne Lester Harvey Schatz Limited space is available, so sign up today! Robert Doll Steven Markovitz Milton Superstine Heidi Erb Paul A. Marshall Ray Tollefson Fall Support Group in Lillian Finn Robert G. Mathieson Georgia Mae Tucker-Lambert D.C. Jack C. Gallalee Teresa Miller Earl Van Hise Adults with TS living in the Washington, Jim Gartenberg Janet Kay Mulholland Ike Wenger D.C., metro area, including Delaware, Edgar Griffin Joanne Noyes Dwight Williams Virginia, and Maryland, are invited to Edward Grimpel Jackie Olivo Catherine Winter participate in a local support group. The Dick Hass Guy Oswalt location of the support group will be Carol Hearn Victoria Palmer determined depending on those who plan to participate. Look for more information in the next issue of Perspective about this opportunity or contact Linda Creighton, Honorariums (January 31, 2002 – May 31, 2002) program manager for outreach and awareness You can honor a friend or family member for an important occasion with a at email@example.com or call gift to the TS Alliance. It is a wonderful way to send a birthday or (800) 225-6872. Again, space is limited, so anniversary wish, or congratulations for retirement, a job well done, sign up now! graduation, etc. Please include the name and address of the individual being honored so that acknowledgement of your kind donation can be sent. Timothy Addison Alan Anderson Anne Heilman Helene Hirschfeld Jenna Miles Roger Miles This ‘N That Cal Bayer Dana Holinka Dory Nemeth Ethan Bennett Hannah Hoslet Lauren Niemeyer Group Home Experience Samantha Blieden Benjamin Hutchinson Heather Nixon Sought Hunter Bostwick Foster Eric Hyde Victoria Palmer Guardians often want to know how to start a Lance Bradford Carl E. Jensen Eric Parkes group home for their adult children with the Daniel Buchsbaum Sara Morgan Johns Muriel Pattis financial aid of local, state and federal funds. Alan Carlton Annie Johnson Rachel Plavin If you have successfully achieved this goal, Kathryn Carter Emily Johnson Jack Poutasse please share your wealth of knowledge with Faith Chadderdon Scott Johnson Thorpe Richards others. Contact Linda Creighton at Melanie Chervanik Michael Jorski Kevin Robinson firstname.lastname@example.org or call (800) Abigail Cooper John G. Kaporis Kaitlyn R. Sabedra 225-6872. Amelia Cooper Yukari Iwatani-Kane Benjamin Shapiro Paul W. Durdik Samantha Kieny Emmory R. Shapses Annual Campaign Updates Jeremy Elias Frank M. Kliebert Christopher Sherman The STAMP OUT TS letter-writing Gloria Fixell Kolten Larson Jarrod Stewart campaign received a terrific start in May Isabel Garcia Sheldon Le Duc Shae Sunahara during TS Awareness Month. At press Bailey Roland Giannini Thomas Lindsey Andrew Trundle time, more than 300 volunteers were Laurene Gobrogge Hannah Linsin Kurt Ullrich signed up to write letters to help raise Meagan Golden Haley Lynch Michael Valdez public awareness and funds for the TS Colleen Goodrich Wren Makowsky Erin Wilson Alliance. For updates on the STAMP Dick Haas Matthew Mastbaum Lindsey Wilson OUT TS campaign, please refer to the TS Jade Hahn Harrison R. Miles Alliance Web site at www.tsalliance.org. 23 SUMMER 2002 Tu b e r o u s S c l e r o s i s A l l i a n c e Members of the Tuberous Sclerosis Alliance are a viable force in the ongoing fight against tuberous sclerosis. Your voices help us make change. Annual membership and gift membership contributions enable the TS Alliance to: Appeal for additional federal and corporate funding for TS research Provide necessary resources to the medical community for the better care of those affected, and Provide information and support to affected families across the country As we become united in our crusade to fight tuberous sclerosis, our voices resound across the country, creating awareness of TS. Please fill out the envelope between pages 12 and 13 so that your voice is heard. Non-Profit Org. U.S. Postage PAID Capital Hts., MD 801 Roeder Road, Suite 750 Permit No. 6041 Silver Spring, MD 20910
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