G R E AT E R P H I L A D E L P H I A C H A P T E R news Fall 2007 30TH ANNIVERSARY PICNIC ugust 12 was a glorious day! A The sun shone brightly on the more than 250 ALS revelers who came out to celebrate the Chapter's 30th Anniversary at a picnic at Mermaid Lake in Blue Bell, PA. PALS, supporters, families and friends who have been associated with the Chapter since our early years enjoyed a day of barbeque, swimming, waterslides, basketball, horseshoes, softball, volleyball, games and good conversation. It was a trip down memory lane for some of the pioneers including as Bruce and Jane Berkowitz, Valarie Swartz, the Yosts, the Oppenheimers and the Chapter staff. The gleaming sunlight poured through the cloudless sky, as the glistening pools attracted all generations for an afternoon of fond remembrances. < INTRODUCING President’s Message ........................p. 2 the Young Friends of The ALS Association E.D.’s Musings................................p. 3 Neurologist’s News..........................p. 4 We are pleased to introduce The Young Friends of The ALS Association. The Young Research Update ............................p. 5 Friends will be a dynamic group of individuals over 21 years of age who are Life Income Gift Help......................p. 6 dedicated to furthering the goals of The ALS Association, Greater Philadelphia Advocacy Days ................................p. 7 Chapter. This group will promote our mission to a network of people different from Patient Profile: Larry Dodds .............p. 8 our traditional audience and engage them at a time when they are looking for a Walks to D’Feet ALS® ............pp. 10-11 “cause” to both volunteer for and support financially. This membership group and Past & Upcoming Events ........pp. 12-13 volunteer committee will meet on a monthly basis to enjoy happy hours, tours and Patient Services Events/IMO ...pp. 14-15 cultural activities (both fee-based and free) all while raising funds and awareness for Calendar of Events ........................p. 16 The ALS Association. (Continued on page 3) ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 2 BOARD OF DIRECTORS Chair, Board of Trustees Board Chair’s Message BENJAMIN OHRENSTEIN Benjamin S. Ohrenstein, Esq. Chair, Board of Overseers his column is titled “board conjunction with the Board of Overseers. There Ellyn C. Phillips, President Vice Chairs T chair's message”. Have you ever wondered what that means are also Board committees, such as the Budget and Finance Committee, the Patient Services Dale J. Shimer Patricia M. Lake Quinn and what my role as Board Committee, the Audit Committee, and the Secretaries Chair is - other than to write Governance Committee, consisting of some, but Susan L. Ross Wendy Schermer, Esq. this column? Let me try to not all of the members of the Board as well as Treasurer provide you with some insight. some non-Board members, which meet on an Laurence J. Delaney, Jr. irregular basis throughout the year. I am Jeffrey L. Abrams, Esq. Our Chapter is a Pennsylvania non-profit responsible for the staffing and the operation of Rhoda Albom Irving Altman corporation. Although it clearly has a legal those committees and, among other things, Virginia Amaro Gila Aviram relationship with The ALS Association, the therefore, attend all of those meetings as well. Michael Barkann national organization that shepherds and provides Julie Charlestein Benjamin Bruce Berkowitz oversight and cohesion to the various chapters I am blessed with a Board of conscientious, Ellen Brosso throughout the country, we are a separate legal skilled, and caring people. They are all hard Suzanne Bruce Tony Burns entity and are required to operate within certain workers and do a terrific job of keeping me on Marcy Cardonick Doug Carpenter parameters, including having a Board of my toes. In truth our Chapter has grown into a Malvina Charlestein Directors. Okay, but what does that mean? very complex organization. To do its job properly Morton L. Charlestein William Conners the Board of Trustees is constantly struggling to Ann Cutler In general terms the Board of Directors is the redefine its governance responsibilities. As the Michele DeVicaris Christian Dyer governing body of the Chapter. Its function is Chapter grows we continue to grapple with Arthur R. Ersner, MD Vickie Farber to establish the operating policies of the issues of strategy and programming and with Lawrence Finkelstein, Esq. Chapter (our “business” is to provide patient the constant concern of the management of our Sidney Gable Nancy Giles services, help fund research, educate the financial risks and the oversight of our processes Andrew A. Goldman Robert Goudie community, and advocate about ALS matters - and financial controls. Our budget process is Zelda Greenspun but from an operational perspective how do we daunting. The Board of Trustees also takes Kent C. Griswold Thomas H. Hipp do that?), appoint the executive officers of the seriously its concern about the quality of its Hara K. Jacobs Chapter, provide management oversight, and human resources, particularly in view of the Richard T. Kanter Elkan Katz make major financial and business decisions, Chapter's responsibility for patient services. Frank J. Kelly Robert A. Korn, Esq. such as creation and supervision of the Ellen Farber Kurtzman Chapter's budget. We are somewhat unique in Think about what our Chapter does and why it Leonard M. Lodish Susan F. Lodish that we have divided our Board into two parts: exists. The Chapter deals with life and deals with JoAnn Marano one called the Board of Trustees, the other it on a daily basis. Though we don't particularly Christina Martin Linda Matz called the Board of Overseers. The Board of articulate it as such, life is truly a group project. Paul McHendry Kathleen A. McLamb Trustees performs the governance functions and The Board of Trustees knows that and, therefore, Shelbie Oppenheimer the Board of Overseers oversees ALS advocacy its members all recognize that it also has even a Sandra Piersol Doug Proctor and the implementation of fund-raising policies greater responsibility of setting the highest possible Anne B. Putney and issues as well as taking responsibility for standards of integrity and ethics - the way the Dan Quinn Saul Reibstein special events. Chapter does things and how it functions as an David M. Ricci Mike Rifkin organization. The Board of Trustees sets the Richard B. Ruben I chair the Board of Trustees, that is, I am the ethical tone of the Chapter through its approach to Richard Schiffrin, Esq. Shonda Schilling person who is responsible for presiding over the governance. I am pleased to say that I am the Lisa Schwab Al Slipakoff Board of Trustees and leading it in a manner that person who is responsible for presiding over our Phillip Speiser hopefully results in its properly and fully Board of Trustees and leading it. Albert J. Stunkard, M.D. Craig R. Tractenberg, Esq. performing its governance functions. We are all Kathryn Voit volunteers. We meet a minimum of at least four And oh, yes, I also write this column. < Gerard Voit John Weber times a year as a complete Board, once in Felice G. Wiener, Founder Lauren Stevenson Yacina The Board Chair Message by Benjamin Ohrenstein alternates issues with the President's Report. E.D.’s Musings JIM PINCIOTTI, EXECUTIVE DIRECTOR recently had the all that are journeying with ALS. is no doubt that therapies and a cure can I pleasure of visiting a family that is He told me something that was not really new information, but he said it with such be found, it is a question of when. A large part of the answer depends on the currently living with conviction and passion that it proved to allocation of resources and an increase in ALS. I find that I be a re-awakening for me. He said, “the funding. generally take away only way that we are going to beat this more from these days thing is more money, and I want to help Won't you join me in re-committing to this than I give. Inevitably the discussion raise money for research and for fight? Take every opportunity to finds its way to the same place, the hope, services.” We spoke for a long time about communicate with public officials, the wish, desire, prayer for answers. We all the need to enlist the national and state need to dedicate our public agenda to want a cure or, alternatively, a therapy government to sharpen their focus on, finding answers to ALS. Help The ALS that will slow the progression of this and increase the pace of, research into Association stay in the forefront of ALS terrible “beast” called ALS. ALS as well as other diseases. He clearly research through your generous donations, believes, as I do, that the answer to ALS through raising funds and awareness, and This particular day, the husband of the is no longer beyond the capabilities of through your participation in Chapter person with ALS regaled me with stories modern science; it is simply beyond the events. and anecdotes of his earlier life. I current dedication of time, talent and learned about his time in World War II resources. You can take the first step right now. Log and his post-service college experiences. onto our website, www.alsphiladelphia.org, The stories were fascinating and The ALS Association is proud to be the click “Sign Up to be an ALS Advocate” captivating, just as the stories and single largest non-public funder of ALS and register as an ALS Advocate. You will memories that we all have fascinate and specific research, but the need is for a receive periodic emails updating you captivate those that take time to listen. concerted effort on the part of everyone to about current national and local issues decide to make health issues a public that relate to the fight against ALS. You However, the thing that sticks with me; priority. As my new friend said, the will also have a simple, ready made way the nugget that I was able to take away reason we were able to put a man on the to communicate your personal stories and and share with you, is his fervent desire moon is because it was a big, bold public passions to your elected officials. It only and passionate commitment to do priority and, with the availability of takes a minute. It doesn't cost a thing. something to make a difference, not only resources, a public/private partnership It will make a difference. < in the life of his wife, but in the lives of enabled the impossible to happen. There (Continued from cover) Congratulations INTRODUCING the Young Friends of The ALS Association to Ben Ohrenstein on The Young Friends Group will provide a fun and meaningful way to get involved and make a difference in the life of someone living with ALS. The membership fee of being named one of the $30 per year will entitle members to the following: 75 Greatest Living • ALS Association Newsletter Philadelphians by the • invitations to special events Philadelphia Eagles & • invitations to monthly happy hours at chosen locations • discount at fee based Young Friends events Dunkin Donuts, for his • discount to the ALS Association's Annual Hot Chocolate event. contributions to our To become a member of the Young Friends or to find out more about the group, Chapter and his visit www.alsphiladelphia.org and click on How You Can Help and then Become A commitment to Young Friend. community service. Have a myspace page? Make us your friend: www.myspace.com/alsyoungfriends < 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org 3 ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 4 Translational Research: APPLICATIONS FOR ALS Lauren B. research dollars. The story of how Over the last few years, there have been Elman, M.D. research in ALS has progressed over the multiple high profile, randomized last 15 years conforms to many of the controlled trials of potential disease- principles of translational research. modifying therapies in ALS, including topiramate, celecoxib and minocycline, Having a good model system is the key among others. All proceeded based on recent article on the front page of to effective translational research. An pre-clinical data gained from in-vitro A the Philadelphia Inquirer posed the question of whether research appropriate model is an animal that manifests disease clinically in a pattern models and trials in the ALS mouse model. Whereas each of these drugs was effective dollars directed at finding a treatment similar to affected people; it is an added at delaying the onset and/or slowing the for ALS have been wasted (Costly Error bonus if the etiology of disease is the progression of disease in the mouse model, in Health Research? 9/4/07). same in the model system as in people. none of the drugs has proven effective in Answering this question requires an In most cases, ALS is a sporadic disease people. This has caused obvious understanding of the scientific method with an unknown cause. The disease is disappointment and frustration among and translational research. familial in 10% of people with ALS. In patients, family members and researchers 1993 researchers established that alike. The failure of treatments in people Translational research is the process of mutation in the gene encoding the protein after showing promise in the ALS mouse bringing science “from the bench to the superoxide dismutase is responsible for does call into question whether the mouse bedside” (and back). The bench refers to 20% of familial ALS. To date, this model currently in use is optimal. traditional laboratory-based activities that remains the most common known etiology involve study of non-human organisms, of ALS. Unfortunately, discovery of this Recently, colleagues at the University of from cell culture gene has not yet Pennsylvania identified a pathological models in a petri provided protein present in the brains and spinal dish up through targeted therapy cords of ALS patients. The protein is A recent article on the non-human for ALS largely called TDP-43 and its significance is still primates. front page of the because it was being investigated, but it is certainly a new Bedside research not immediately clue to the pathophysiology of the disease. Philadelphia Inquirer includes clinical evident why this Interestingly, this protein is not found in trials as well as posed the question of mutation causes the tissue of patients who had familial epidemiological ALS; research ALS. This finding may suggest that there research designed whether research dollars into this is something fundamentally different about to further directed at finding a question is still familial ALS due to SOD mutations and elucidate the ongoing. sporadic ALS, and may further suggest that clinical patterns treatment for ALS have Researchers findings based on the SOD mouse model and features of been wasted … worked rapidly may not be generalizable to sporadic ALS. disease. to develop a Traditionally, transgenic However, this does not call into question when science mouse model of the principles and importance of the suggests a reasonable candidate for drug ALS by inserting mutant SOD1 gene from methods underlying translational research therapy, based on mechanism people affected with familial ALS into the that have guided ALS research over the of action or known biological effect, it is mouse genome. These genetically last decade. “Bench to bedside” is the tested in model systems and if it proves engineered mice developed a condition most efficient way to test large numbers of effective, then it can be brought to clinical clinically similar to ALS characterized by medications preclinically and it has a trial for further study. Translational progressive muscle weakness that followed proven track record of success. ALS has research requires communication in both a predictable clinical pattern with respect proven to be an incredibly complex directions to be most effective. Clinicians to time of onset and disease progression. problem to solve. We have high hopes that may develop special insights into disease The ALS mouse was then ready for use to TDP-43 and all of the new clues that it that may inform directed bench research, study the pathophysiology of motor neuron yields will lead us to an effective which may then lead to large scale clinical disease and to test candidate medications treatment, but it will take time, energy and trials. This model is recognized by the NIH for efficacy in stopping or slowing the the tools of translational research to clarify and is fundamental to the NIH roadmap progression of disease. its importance. < designed to maximize effectiveness of Research Update Research Department The ALS Association research THE MILTON SAFENOWITZ POST-DOCTORAL FELLOWSHIP FOR ALS RESEARCH Roberta Friedman, Ph.D., Information Coordinator, course of the ALS symptoms. Knowing how the mitochondria contribute in ALS will guide therapeutic efforts in the disease. Da Cruz will also see whether mitochondria are compromised primarily General Hospital will build on progress achieved with funding from The ALS Association in projects originating under the direction of Jeffrey Macklis, Ph.D., at Harvard. These investigators have found in motor neurons or in muscle. For this, some of the control signals that guide our young investigators are F poised to join the effort to find effective therapies for ALS she will use mice that have been genetically modified to have enhanced mitochondrial activity either in motor stem cells in the developing brain to send their long extensions, called axons, down the spinal cord to connect to the lower funded by The Milton Safenowitz neurons or muscle. motor neurons that contract muscles. Post-Doctoral Fellowship for ALS Rouaux will use genetic engineering to The Metabolome of the Cerebrospinal confirm if these signal molecules are Research. These promising Fluid: Signature for ALS directing certain stem cells to become scientists have proposed the motor neurons that extend down the innovative and important efforts Gurudutt Pendyala, Ph.D., working with spinal cord from the cerebral cortex that will accelerate progress in Howard Fox, M.D., Ph.D., at The Scripps (cortico-spinal or upper motor neurons) the field. The ALS Association is Research Institute, La Jolla, Calif., will during development. The information especially committed to bringing seek to find a marker of the disease in should give important insights into stem new concepts and methods into the products of metabolism of the human cell therapy for ALS that could show a body as well as in animal models for ALS. way to produce upper motor neurons to ALS research, and young Changes in the body's metabolism might replace the dying ones. scientists play an important role be reflected in the small molecules in this process. produced by the body's chemical Effect of Astrocytic Nrf2 Activation reactions and present in the fluid that on the Onset and Progression of Motor Determining the Contribution of bathes the brain and spinal cord. The Neuron Degeneration in an ALS-Animal Mitochondrial Dysfunction in ALS search through the so-called metabolome Model Pathogenesis will uncover those metabolic products whose amounts change in response to the Marcelo Vargas, Ph.D., working with Sandrine Da Cruz, Ph.D., working with disease process in order to identify a Jeffrey Johnson, Ph.D., at the University Don Cleveland at the Ludwig Institute at panel of molecules that report the of Wisconsin, Madison, will examine the the University of California, San Diego, presence and progress of the disorder. A role of a defense system present in the will study the role in ALS of the reliable and reproducible set of metabolic cells that surround and aid the motor mitochondria, the cellular power supplies biomarkers would allow faster diagnosis, neurons. Astrocytes, star shaped cells that fuel all metabolic reactions. Mice are streamlined clinical trials, and a window that buffer the motor neurons from available that have been genetically into the changes that could provide potentially toxic products of normal cell manipulated to have either enhanced therapeutic targets. The Fox lab has an chemistry, have a defense system headed activities of a key enzyme within the established record of providing by a protein abbreviated Nrf2. With mice mitochondria or to contain more of these biomarkers in the field of HIV dementia that make more than the usual amount cell constituents. Da Cruz will breed each and will now apply their expertise to ALS. Nrf2 in astrocytes, Vargas will see if this of these mice to two different mice defense system might be reinforced for mutants, each having a different change Molecular Controls over Early ALS by crossing Nrf2 over-expressing to the protein, copper-zinc superoxide Specification and Differentiation of mice with those making the mutant dismutase (SOD1), responsible for some Corticospinal Neurons (Upper Motor SOD1 protein. This experiment should inherited cases of ALS. Resulting mice Neurons) define whether the Nrf2 system is a way will have changes in mitochondrial to affect the disease process and enzymes as well as altered SOD1. These Caroline Rouaux, Ph.D., working with therefore a promising avenue toward mice should be able to show if enhancing Paola Arlotta, Ph.D., Massachusetts effective therapy. < mitochondrial function will aid in the 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org 5 ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 6 Research Study Persons with Amyotrophic Lateral Sclerosis (ALS) Wanted for a Research Study esearchers at Penn State College of Medicine are seeking R participants for a research study on Quality of Life (QOL) and ALS. The purpose of the study is to better understand the For more information or to request a paper and pencil copy, call QOL of patients with ALS who receive different forms of care for the study coordinator, Beth Stephens, at 717-531-0003, the disease. Participants will complete a questionnaire (online or extension 283395, or by email at firstname.lastname@example.org with a paper and pencil version) that asks questions about physical health status, quality of life, and use of medical Study Director: Zachary Simmons, MD, Department of Neurology, services for care of ALS. Survey responses are confidential. Penn State College of Medicine. All persons who have been diagnosed with the disease Amyotrophic 'This research study has been approved by the Institutional Lateral Sclerosis are eligible to participate in this study. Review Board, under federal regulations, at Penn State College of Medicine, Penn State Hershey Medical Center.' < Gift Items Benefit ALS The holidays are right around the corner, and what better to give your friends and loved ones than a gift to benefit the fight against ALS? The Greater Philadelphia Chapter has a variety of fundraising items available. Swarovski® simulated pearls with sterling All revenue from the sale of My Mom's silver spacers in between the beads. The Recipe Box will be donated to support bracelets can be shortened or lengthened ALS research. To order, visit to fit your needs. The price of the http://www.lulu.com/content/540842 bracelet is $35 with $5 going to our NOTE CARDS FEATURING THE chapter. Other ALS jewelry designs are “STRIKE OUT ALS” WRISTBANDS PHOTOGRAPHS OF ZEEV AVIRAM (PALS) also available. Order yours by visiting Red wristbands with the inscription Enjoy the amazing photography of PALS www.mcphersonandcompany.com, or by “Strike Out ALS” are available at all Zeev Aviram with these beautiful note calling 717-731-3420. chapter events for $1 each. Quantities of cards. Each set of 10 note cards costs 10 or more will be shipped to you for the $20 and features a selection of his work. “MY MOM'S RECIPE BOX” COOKBOOK cost of shipping and handling. Call the Call the Chapter at 215-643-5434 or 1- TO BENEFIT ALS Chapter at 215-643-5434 to order your 877-GEHRIG-1 to order. After Lisa Katucki lost her mother to wristbands. ALS, her father gave her a treasure - her SWAROVSKI CRYSTAL BRACELETS mother's recipe box. She has reproduced ALS RIBBON CAR MAGNETS McPherson and Company, a jeweler those treasured recipes in “My Mom's Ribbon-shaped car magnets feature based in Wormleysburg, PA has designed Recipe Box,” a cookbook that contains Yankees-blue pinstripes, Lou Gehrig's an ALS bracelet with baseball in mind. recipes from family, friends, co-workers, number 4, and the words “Strike Out The sterling silver toggle bracelet features and the community. Since half of the ALS.” The magnets are $5 at all Chapter a sterling silver baseball, catcher's mitt treasure is the handwriting of the person events, or can be shipped in quantities of and bat charm. The bracelet is hand- who shared it, the book includes copies 2 or more. Call the Chapter at 215-643- strung using Swarovski® red crystals and of some of the hand-written recipes too. 5434 to order your magnets. < There is Still Time to Make a Charitable IRA Rollover Gift! SPECIAL TAX-SAVINGS BENEFITS FOR THOSE 70 OR OLDER END BY 12/31/07. he special charitable IRA Rollover provision contained in the • The charitable gift must be made directly from the IRA T Pension Protection Act of 2006 will expire at the end of this year. This provision allows donors who are age 70 or older to trustee/administrator to our Chapter. If you accept a distribution and then forward the funds to us, the distribution will not qualify make a gift up to $100,000 per year from their Individual for the exclusion and will be considered taxable income. Retirement Account (IRA) assets directly to qualified charities • The exclusion applies only to outright gifts from IRAs. Charitable without being taxed on the distribution. gift annuities, charitable remainder trusts, and other similar gift arrangements do not qualify. If you have an IRA, you may want to consider using it to make a gift • Charitable gifts from IRAs will not be eligible for a charitable to The ALS Association, Greater Philadelphia Chapter. Please note income tax deduction. the following: For more information please contact the Chapter's Chief • The provision applies only to traditional and Roth IRAs. Other Development Officer, Jeff Cline, at 215-643-5434 or charitable retirement plans such as 401(k), 403(b), SEP, and SIMPLE email@example.com. Please consult with your tax or financial plans are not eligible. advisor regarding your situation before making any gift. < • Donors must have reached age 70 by the date of the contribution to qualify for this income tax exclusion. NCPG SURVEY OF IRA DISTRIBUTIONS TO CHARITY The National Committee on Planned Giving (NCPG) is tracking information on IRA Distributions received by charities since the enactment of the Pension Protection Act of 2006. As of August 14, 2007, 5,423 individual distributions have been reported with a total value of more than $96 million. giving Workplace Giving - A Great Way to Support the ALS Cause W orkplace giving provides donors with an easy way to make a significant gift over time to support the fight against Lou Gehrig's Disease. If your employer sponsors its own company-wide giving campaign, or participates in the United Way, you can support the ALS Association, Greater Philadelphia Chapter by designating a portion of your regular paycheck. Donors may also designate The ALS Association, Greater Philadelphia Chapter in city, county, or school employee workplace giving campaigns. Most workplace giving campaigns take place in the fall. Now is the perfect time to take advantage of this great benefit or Quite often your employer will match your donations dollar-for- review your current nonprofit designations. dollar which doubles the impact of your support. Finally, if your employer has a matching gifts program, please In addition, The ALS Association is a participating agency in be sure to request that your gift to The ALS Association, Greater Community Health Charities (CHC), the largest workplace giving Philadelphia Chapter be matched. Thank you! program devoted solely to health. Community Health Charities conducts public sector workplace giving campaigns in federal For more information, contact Roxanne Walter, government installations as part of the Combined Federal Manager of Sponsor Relations at 215-643-5434, ext. 43 Campaign, and at state government locations. CHC also or Roxanne@alsphiladelphia.org. < conducts employee workplace giving campaigns in corporations. 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org 7 ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 8 Patient Profile: BOB HAINES efore he was diagnosed with ALS, Bob Haines spent friends. He even claims that he B much of his time outdoors. He engaged in many activities such as snow shoeing, cross-country skiing, probably would never have written his memoirs, which took canoeing, and kayaking. In addition, he used to bicycle over him four years, had it not been two hundred miles a year, and volunteered much of his time for the diagnosis. “So, from my to trail maintenance at Pennypack Park in point of view,” he adds, “some good has Philadelphia. come from even this damned ALS.” Bob even Additionally, Bob has done numerous claims Bob also puts much pride in his family. mountain climbs, the most memorable of He and his wife, Mary Alice (whom he which includes a trip to Soviet Central Asia that he adds is now his “super, wonderful in 1989 in which he and his his long-time Caregiver”), raised their four children in a friend and fellow climber, John Weisel, failed probably would house they built together in upper Bucks to locate the mountain they had set out to climb. In the end, they climbed three never County. Although his children are now grown and he and his wife have moved different mountains instead. Bob has also have written his back to their old neighborhood in traveled a lot, and not only to find new Northeast Philadelphia, he still takes pride mountains to climb. He served in the Navy memoirs, which in the achievements of his three daughters during World War II which took him to many and son and the lives they have made for islands in the Central and West Pacific. He took him four themselves. Moreover, he appreciates the also visited many places across the United years, had it not help that his family provides him. States. These excursions include canoe trips in Eastern Canada, hiking trips in the been for Also, he has been involved in the Smokey Mountains of Tennessee, and rafting Philadelphia Chapter of The ALS trips in Maine. the diagnosis. Association and says, “I have never met any group of people as dedicated and For someone who has been as physically active as Bob, you caring as they are. Dr McCluskey and the entire staff are to would think a diagnosis of ALS would really dampen his be congratulated.” Although his life has changed drastically spirits. Yet, this is not the case. “I found that spending over the years, it is clear that Bob does not let it get him hours on the Internet were not only amazingly informative, down. Rather, he draws strength from a positive outlook, but also entertaining,” says Bob. “I feel as though I have a sense of humor, and a support group made up of loving the world's best library at my fingertips.” Moreover, he is family and friends. < able to enjoy good movies and spend time with close Couple Rides from Maine to Philadelphia on Tandem Bike OVER 1,000 KM RIDE HELPS THE FIGHT AGAINST ALS usan and Leonard Lodish have The Lodishes kicked off their trip S taken bicycling to the next level! In July, the couple turned in Bar Harbor, Maine, on Friday, July 6. They arrived in Boston for to their tandem bicycle to continue a a visit with ALS Researcher Tom tradition started in 1996 to raise Maniatis, PhD at Harvard Medical money for the fight against ALS. This School on Friday, July 13. They year, they remained in the U.S., riding then wrapped up their trip in through Maine, New Hampshire, Philadelphia on Wednesday, July Susan & Massachusetts, Connecticut, New York, 18. This year, this trip enabled Leonard Lodish New Jersey, and ending in Philadelphia them to raise over $97,000 for - a ride that culminated in 630 miles. ALS research. donation in support of their trip, visit During this trip, they made stops at the ALS Association, Philadelphia ALS research centers in Bar Harbor, For more information about the Chapter's website at Boston, New York and Philadelphia. Lodish's bike ride, or to make a http://www.alsphiladelphia.org. < advocacy Advocacy Update HOUSE SUBCOMMITTEE PASSES ALS REGISTRY ACT W e are pleased to report that in late September, the full House Energy and Commerce Committee unanimously passed the ALS Registry Act (H.R. 2295)! The bill now heads Committee Members repeatedly expressed support for the bill as an important component in the fight for a treatment and cure for ALS. to the House floor for a vote, the final Thank you to the entire ALS community stage of the legislative process in the for their relentless outreach in support of House of Representatives! the ALS Registry Act. PALS, families, caregivers and advocates from every state The Committee’s action comes just over have contacted their Members of Congress three months after the bill was continually since the bill was introduced reintroduced in the 110th Congress – an this year. In addition, ALS Association extraordinarily short amount of time for a Chapters reached out to their grassroots bill to progress, especially considering networks, held meetings in Congressional most bills are never even considered by a Districts and helped to deliver our Congressional Committee. It is clear that message loud and clear to the people who the Committee not only responded to our represent us in Washington. There is no advocacy, but also to the urgent message mistake that our message has been heard; we delivered: people with ALS can’t that our advocacy continues to make a afford to wait! difference! The bill’s sponsor, Congressman Eliot We will continue to keep you updated as Engel (D-NY) praised the work of The ALS the ALS Registry Act moves to the House SAVE THE DATE: 2008 Association and thanked The Association floor. In the meantime, we encourage you and the Centers for Disease Control and to continue to reach out to your U.S. ALS Advocacy Days Senators using the online Advocacy Action Prevention for working closely with him to in Washington, DC Center at www.alsa.org/policy. You can also help advance the bill. In addition, will be held on Congressman Lee Terry (R-NE), the lead register to become an ALSA Advocate and May 11-13, 2008. Republican sponsor of the bill, and other receive regular email updates. < State Advocacy Efforts Continue in PA dvocates in Pennsylvania have worked hard this year to support a line-item for ALS in the budget. Thank you to A partner with state representatives to fund ALS programs. Despite our numerous efforts and support from many members everyone who contacted their representatives regarding this important effort. We will keep up the fight! of the legislature, we were not able to secure funding in this fiscal year. However, we are encouraged by the tremendous Plans are in the works for our third annual ALS Awareness Day progress we have made so far, especially considering our state in Harrisburg coming up in February 2008. If you have a advocacy program was just launched last year. It is a connection to a state representative in PA, or if you would like remarkable accomplishment to go from holding a small ALS to get involved in ALS Advocacy on the state level, please Awareness Day in the Capitol to having legislative supporters contact Jenny Ruth at 215-643-5434, or from each party in each Chamber agree to introduce and firstname.lastname@example.org. < 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org 9 ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 10 Upcoming Events It’s not too early to think HOT CHOCOLATE March 13, 2008 about Holiday Currents Ballroom at the Adventure Aquarium shopping… 6:30 - 9:30 p.m. Join The ALS Association Always one of our most popular for an Evening of Giving events, Hot Chocolate will take at the Oxford Valley Mall place on Thursday, March 13th on Sunday, November in the new Currents Ballroom at the Adventure Aquarium in 18th from 7:30 – 10:30 Camden. Enjoy chocolate treats pm. This private and sample chocolate martinis all shopping event will help while exploring the Shark Realm. us raise funds the 2008 Bucks County Walk to For more information call D’Feet ALS to be held 215-643-5434 or visit www.alsphiladelphia.org. April 12, 2008. The event will feature exclusive store discounts throughout the mall, family entertainment, food sampling and more. Tickets are $10 and can be purchased through The ALS Association. Contact Julie McKeever at 215-643-5434 or email@example.com for more information! THE ALS ASSOCIATION INTRODUCES New Logo & Theme Line he ALS Association has unveiled a “We recognized that The ALS Association had significantly grown T dynamic new logo and theme line that underscore its leadership, vision and advanced in its ability to serve the ALS community,” remarked Jeff Snyder, vice president of communications. “To acknowledge and commitment in the fight against and underscore that growth, it was time for the logo to advance too Lou Gehrig's Disease. - to better reflect our leadership, dedication and role as the champion of the cause of people with ALS.” The new logo of The ALS Association - a hand touching a vibrant red-letter “A” - visually represents its unending, heartfelt pledge to That dedication is exemplified in the new mission statement for fight on every front to improve life for those living with ALS, also The Association: “To lead the fight to cure and treat ALS through known as Lou Gehrig's Disease. The visual identity reflects The ALS global cutting-edge research, and to empower people with Lou Association's three focused areas of expertise and commitment: Gehrig's Disease and their families to live fuller lives by providing research to find a cure, advocacy at the highest levels of them with compassionate care and support.” government, and comprehensive care and support services for all people living with Lou Gehrig's disease. To reflect The Association's The Association provides localized patient care and family support sole focus, attached to the red A is a new theme line: “Fighting in communities across the country through its nation-wide network Lou Gehrig's Disease.” The logo was developed in partnership of chapters. The new logo exemplifies the excellent, personalized with Minneapolis-based advertising agency, Campbell Mithun. care that our organization offers to those touched by ALS and the work that is being done in research, advocacy and at all levels of The effort to develop the new brand began two years ago, as the The Association. < ALS Association marked its 20th anniversary. walks 2007 Walks To D’Feet ALS®http://WALK.ALSPHILADELPHIA.org Past Walks To D’Feet ALS® A new location and a whole new feeling! Over 1,600 walkers enjoyed a sunny, breath taking day at the Music Upcoming Walks To D’Feet ALS® 2007 Greater Philadelphia Walk to D'Feet ALS® presented by McCarter & English, LLP Saturday, November 10th, 2007 2008 Bucks County Walk to D'Feet ALS® presented by McCarter & English, LLP Saturday, April 12, 2008 Pier on the boardwalk for the 2007 Valley Forge Military Academy Oxford Valley Mall Ocean City Board…Walk to D’Feet ALS. and College Langhorne, PA Almost 80 teams and individuals Wayne, PA walked for 88 people and raised over Registration: 7:30 a.m. Registration: 10:00 - 11:00 a.m. Walk Starts: 8:30 a.m. $200,000 to support patient services Walk Starts: 11:00 a.m. and research for The ALS Association, Don’t miss out on the first walk of the Greater Philadelphia Chapter. A For more information about forming new year! For more information please special thank you to the Goudie Family, a team or joining the Walk committee, contact Julie McKeever at 215-643-5434 the City of Ocean City, Presenting contact Allison Walker at ext. 26 or firstname.lastname@example.org Sponsor’s CertainTeed and ShopRite 1-877-GEHRIG-1 or e-mail at Allison@alsphiladelphia.org. and their Customers. Plus countless other sponsors and volunteers! Be on the look out for the 2008 date! WE THANK OUR WALK SPONSORS Presenting Sponsor of the Ocean City Board… Walk to D'Feet ALS® Presenting Sponsor of the Greater Philadelphia — CERTAINTEED CORPORATION & Walk to D'Feet ALS® SHOPRITE AND THEIR CUSTOMERS — MCCARTER AND ENGLISH, LLP Hoyle, Fickler, Herschel, & Matthes, LLP Ride-Away Air Products & Chemicals, Inc Kyowa Pharmaceutical, Inc Scherline and Associates, Asbury United Attorneys at Law Methodist Church Lehigh Valley College Atlantic City Electric Lehigh Valley Dairies Smooth Jazz WJJZ 97.5 Brinker Capital, Inc Lehigh Valley Hospital Target Select Commerce Bank and Health Network The Martin Family Fox Subacute Management McMahon Agency, Inc Turkey Hill Minit Markets GRISWOLD SPECIAL CARE, Inc. Rave Motion Pictures Unique Industries, Inc William and Kelly Rambo WLEV Our sponsors help make our Walks to D'Feet ALS® a success! To learn more about the benefits of becoming a walk sponsor, please contact Allison Walker or Julie McKeever at 215-643-5434 or toll-free 1-877-GEHRIG-1. 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org 11 ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 12 donations SaVes4ALS hits another one out of the park this year! With 17 sponsors for the 2007 baseball season, the program has raised over $100,000 in two seasons. SaVes4ALS recruits corporations to pledge a donation to our Chapter for every “save” recorded by the Phillies’ bullpen. The program was developed in 2006 by Suzanne Bruce and Ellen Brosso, both Vice Presidents of Corporate Synergies Group, Inc., a benefits consultant and brokerage firm based out of Mount Laurel, NJ. At the program’s Sponsor Appreciation Event in August, three extraordinary organizations were recognized for their contributions. JOHNSON AND TOWERS, a family-owned retailer of diesel engines and transmissions, was the first to support the Saves program when it was just an idea, the first to sign up as a sponsor, and the first to send in their check every year. “When Suzanne Bruce and Ellen Brosso approached me to be a corporate sponsor for the SaVes4ALS program I thought Gary Johnson and Stan Gawal of TUBE METHODS are big it would be a perfect way to remember my Aunt who passed supporters of SaVes4ALS. “My involvement with the away after a 3 year battle with ALS. It gave me great SaVes4ALS program came about by seeing both Suzanne and satisfaction knowing the donations go to improve the quality Ellen's passion and energy to raise money that would be used to of life for people with ALS and their families. I look forward treat and possibly help find a cure for a disease that has affected to being a part of the SaVes4ALS program for many years to many people as well as close friends of mine,” said Gary come,” said David Johnson, CFO of Johnson and Towers. Johnson, President. Tube Methods has more than 60 years of experience in producing top of the line tubing for industries such THE RASCAL COMPANY has made a significant impact to the as automotive, medical, aerospace and thermonuclear. < quality of life of patients stricken with ALS by their generous donation of 12 Rascal Power Wheelchairs through the Top Left: (left to right) Ellen Brosso, David Johnson (CFO, Johnson and SaVes4ALS program. "The Rascal Company is proud to help Towers), Suzanne Bruce, Shelley Hink (Manager, Johnson and Towers) people with mobility challenges improve the quality of their Top Right: Gary Johnson (President, Tube Methods) with Suzanne Bruce lives with our premium Rascal Scooters and Powerchairs. We of Corporate Synergies. are honored to work with SaVes4ALS and the Greater Bottom Right: (left to right) Jim Day (Electric Mobility), Suzanne Bruce Philadelphia ALS Chapter because of the dedication and and Ellen Brosso (Vice Presidents of Corporate Synergies and Co- commitment you have for accomplishing your Missions," said Founders of SaVes4ALS), Michael Flowers (President of Electric Mobility - The Rascal Company). Michael Flowers, Chairman. Annual Scranton/Wilkes Barre Yankees Autograph Party & Auction for ALS SATURDAY, JULY 28TH n July 28th, more than 400 people came out to PNC Field to meet their favorite Scranton/Wilkes Barre Yankees players and help O raise over $34,000. The day included a silent and live auction of sports memorabilia and gift certificates to local attractions, businesses, hotels, restaurants and more. A jersey auction was held that same night during the Yankees versus the Rochester Red Wings game. Thank you to the Yankees organization, the players, Mike Cummings, the Novitski Family, Cindy Brozyno and all the volunteers for their continued dedication to ALS! Second Annual Oggie Labor Day Golf Sandy Kinderman Outing To Knockout ALS Memorial Golf Tournament FRIDAY, AUGUST 31ST FRIDAY, SEPTEMBER 10TH This outing took place at Centerton Country Club on August This 1st annual golf outing raised over $113,000 for ALS 31st in New Jersey and raised over $5,000! A special thank you Research in honor of Sandy Kinderman. It was held on September to Robert Ogbin who organized the event. 10th, with over 100 golfers, at Green Valley Country Club in Lafayette Hill, PA. Thank you to Judy Kinderman and the Friends of Sandy Kinderman committee, especially: Barbara and Bob Michael Bartone Memorial Golf Dilsheimer, Renee and Rob Dubin, Denise and Michael Krekstein, Tournament and Dinner Dance Sandi and Max Paul, Susan and Jules Seshens, Nancy and Peter FRIDAY, SEPTEMBER 7TH Wood, Sherrie and Morris Willner. 108 golfers teed it up on September 7th at Arrowhead Golf Course. The sixth annual tournament was another fabulous day of golf, camaraderie, fun and fundraising in memory of Michael Shop and Share with Lilly Pulitzer WEDNESDAY, SEPTEMBER 19TH Bartone. The Dinner Dance the next night was sold out, as On the evening of September 19th the Lilly Pulitzer store in usual. Together these two events continue Michael's fight Suburban Square in Ardmore invited everyone to come out and against ALS and reminded those in attendance, “His battle is support the ALS Association with an evening of shopping, not lost unless we quit.” snacking and cocktailing! With a wonderful spread of snacks, beverages and 10% of every purchase being donated it was a Gino's Race wonderful evening for everyone! A special thanks to Anne Hall, SUNDAY, SEPTEMBER 9TH Susan Candello and her staff for all their help and support. On September 9th the Annual Gino's Race Duathlon was held to benefit Greater Philadelphia Chapter of The ALS Association. This is the 7th year of this race, which includes a 2 mile run, 7th Annual KAK Cup Golf Outing 14 mile bike, and ends with another 2 mile run at Cordours FRIDAY, SEPTEMBER 21ST State Park in Hanover, PA. Over 120 participants, came out in This year’s golf outing took place on September 21 at Makefield memory of Gene Gladfelter. A special thank you to Jonathon Highlands Golf Course in Yardley, PA. The event, in honor of Karen Sprenkle, Rod Young and all the volunteers for their hard work Barone, raised almost $12,000! A special thank you to Cyndee on this great event! Ward and all the volunteers for all their hard work on this event. 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org 13 ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 14 Patient Services Holiday Party SUNDAY, DECEMBER 2ND are always surprises ahead so save the date! events EVENTS We look forward to having our annual Holiday party at the Radisson Hotel in Trevose on Sunday, December 2nd. There AFTD/ALS Joint Update FRIDAY, NOVEMBER 16TH The Greater Philadelphia Chapter will be collaborating with the AFTD Association to hold our annual Research Symposium on Friday, November 16th. at the Hilton on City Line Avenue For further information, please contact Mary Dittmar, Patient Our focus will be to address the impact of fronto temporal Services Clerical Assistant at email@example.com or dementia on ALS patients and their families. The 215-643-5434. presentations will include discussions about FTD, ALS, genetic implications, coping strategies and resources. For more information or to RSVP, contact Catherine Pace-Savitsky, Nurturing the Nurturer: 866-507-7222 or firstname.lastname@example.org. Caregiver's Day SUNDAY, NOVEMBER 4, 2007 Caregiver Skills Day The Chapter's annual salute to Caregivers will take place on JULY 27, 2007 Sunday, November 4, 2007 at the ACE Center in Lafayette Hill, PA. This event offers an opportunity for caregivers to network Caregiver Skills Day was held on July 27, 2007 at the Fort with each other, attend support sessions, and be pampered with Washington Hotel and Conference Center. massages, facials, and much more! Respite care can be provided Over 30 individuals attended the program which provided if needed so the primary Caregivers of the PALS can attend. hands on information regarding caregiving skills. A variety of For information, please contact Alisa Brownlee at 215-631- durable medical equipment was on display for caregivers to 1877 or email@example.com learn about and try out! Resource Groups his is a general listing of our Resource Groups. We warmly invite people with ALS, and their families and T friends, to attend. Please call the contact person for each group to confirm actual dates, or you may request to be placed on the Resource Group mailing list. This mailing is distributed monthly and lists upcoming dates, times, and other important information. Also, be sure to RSVP to the facilitator, if specifically requested. Bereavement - Ambler, PA Harrisburg - Hershey, PA Philadelphia - Bala Cynwyd, PA A five-session series is available Info.: Judy Lyter, Info.: Karen Dawson-Haines for people who have lost someone (717) 657-5352 (215) 487-4519 to ALS in the past 2 years. Info. and RSVP: Lehigh Valley - Allentown, PA South Jersey- Jennifer Klapper, Info.: Wendy Barnes, Egg Harbor Township, NJ (215) 726-8724 (610) 282-5904 Info.: Stephanie Hand-Kowchak, MSW, LSW Caregivers and Family Members- North Central - Danville, PA (609) 457-9261 Ambler, PA Info. and RSVP: Info. and RSVP: Peggy Slusser, PhD, RN, CS, Trenton - Lawrenceville, NJ Karen Dawson-Haines, (570) 793-3906 Info.: Cathe Frierman, (215) 487-4519 (609) 394-3556 North East - Moosic, PA Delaware - Wilmington, DE Info. and RSVP: Monmouth/ Ocean County- Info: Wendy Strowhouer, RN Peggy Slusser, PhD, RN, CS, Red Bank, NJ (302) 547-8482 (570) 793-3906 Info: Patricia Schaeffer, RN (732) 450-2677 IN MEMORIAM John Arnold James Beitler Janet Bigenis Linvilla Lynda Boas Orchards Horace Brobst SUNDAY, Louis Burke SEPTEMBER 30TH Michael Capello Alexis Capriotti Linvilla Orchards had much to offer to the patients and family members that attended the event Stephen Coffin on Sunday, September 30, 2007. Over 53 people attended on a beautiful sunny day and joined Rose Dement in on the fun of face painting, a marshmallow roast and other activities the Orchards had to offer. April Dickerson Fred Didomenico Janice Dottavio James Fickes Luann Fitz Marie Flannelly Samuel A. Glick Leola Heintzelman Joan Jamin Luther Jones Evelyn Jordan PROFESSIONAL STAFF Donald Kenny Stanley Kenzler EXECUTIVE DIRECTOR STAFF NURSE MANAGER OF James V. Pinciotti Christine D’Angelo, RN, BSN SPONSOR RELATIONS Joan Long Roxanne Walter Barbara Markley DIRECTOR OF SOCIAL WORKERS PATIENT SERVICES Wendy Barnes, MSW, LSW ADMINISTRATIVE STAFF Phillip May Brenda Edelman, LCSW, BCD Shelley S. Hill, MSW, LCSW Mary Dittmar Patient Services Clerical Assistant Beverly McCarr Susan Schwartz, ACSW, LSW DIRECTOR OF ADMINISTRATION Herman Miller Nilda Mallatratt Jeanne A. Johnson EVENT MANAGER Patient Services Assistant Angelo Monzo Allison Walker CHIEF DEVELOPMENT OFFICER Mary Sharp Arlene Moyer Jeff Cline EVENT COORDINATOR Receptionist/Office Assistant Marvin Newsome Julie Morrison McKeever MENTAL HEALTH NURSE Marianne Mancini Maryann Vagnoni Timothy O'Neill Jennifer Klapper, APRN, BC Executive Assistant LisaJo Pappalardo EVENT ASSISTANT April Haas TRANSPORTATION VAN DRIVERS Anna Petruzzelli ASSISTIVE TECHNOLOGY John Conner SPECIALIST DEVELOPMENT COORDINATOR Thomas R. Mitchell Salvatore Ricchetti Alisa Brownlee, ATP Gerry Neal Joan Borowsky James Roderick COMMUNICATIONS MANAGER FINANCE STAFF SENIOR INFORMATION Ronald Rodgers Jenny Ruth Erin Farrell TECHNOLOGY MANAGER Accounts Payable Specialist Arthur Rothrock REGIONAL NURSE Nora Isaac Nichole Hayward Susan Semuta COORDINATORS DATABASE COORDINATOR Steve Holt Mary Jo Shipe Gail Houseman, RN, APRN, MSN Heather Pecharo Accounts Receivable Clerks Paula Rich, RN, MSN Renee Simmons Sue Walsh, RN, MSN, CS Evelyn Thomas Richard Tressler Volunteers Joseph Volpe We Couldn’t Do It Without Them! 1 - 8 7 7 - G E H R I G - 1 www.alsphiladelphia.org 15 ALS-0907-NL (10 5).qxd 10/11/07 3:03 PM Page 16 Fall & Winter 2007 CALENDAR OF EVENTS SAVE the DATE November for these 4th 14th Annual 18th An Evening of Giving 2008 EVENTS Nurturing the Nurturer Oxford Valley Mall, The ACE Center, Langhorne, PA March 13, 2008 Lafayette Hill, PA HOT CHOCOLATE Currents Ballroom at the Adventure Aquarium, 5th Camden, NJ 14th Annual Curt Schilling ALS Golf Outing December Green Valley Country Club and April 12, 2008 2nd Whitemarsh Country Club, PA. BUCKS COUNTY WALK TO D'FEET ALS®, Patient and Family 10th Holiday Party Oxford Valley Mall, Langhorne, PA 2007 Greater Philadelphia Radisson Hotel, Walk to D'Feet ALS® Trevose PA Valley Forge Military Academy May 11-13 2008 and College, NATIONAL ALS ADVOCACY DAYS, Wayne, PA Washington, DC 16th AFTD/ALS Joint Update Hilton Hotel, May 17, 2008 City Avenue, SEASIDE BOARD...WALK TO D'FEET ALS® Philadelphia, PA Seaside Heights, NJ MORE INFORMATION ON ALL OUR EVENTS, VISIT WWW.ALSPHILADELPHIA.ORG. This Issue We • ShopRite® • McCarter & English, LLP THANK • Independence Capital Partners &SALUTE • Wolf, Block, Schorr & Solis-Cohen LLP The ALS Association (Lou Gehrig’s Disease) Greater Philadelphia Chapter NON-PROFIT ORG. U.S. 321 Norristown Road, Suite 260 POSTAGE Ambler, PA 19002-2755 PAID PERMIT NO. 215 phone 1-877–GEHRIG–1 WEST CHESTER, PA 19382 www.alsphiladelphia.org Our mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.