Document Sample

Accelerate. Empower. Mobilize.
Mission Momentum
Accelerate. Empower. Mobilize.
                                                               About Tuberous Sclerosis
Throughout the TS Alliance’s Fiscal Year 2010 ( July 1, 2009
to June 30, 2010), the organization remained dedicated to
our vision to bring about the day when no one has to endure
the devastating effects of tuberous sclerosis complex (TSC).
                                                               Tuberous sclerosis complex is a genetic disorder that causes
As a result, the TS Alliance’s 2010 focus was to strengthen    tumors to form in many different vital organs, including the
the organization and raise funds to:                           brain, eyes, heart, livery, kidneys, skin and lungs. Epilepsy,
    • Accelerate basic, clinical and translational research;   autism spectrum disorders, and other intellectual disabilities
    • Empower our constituents with information and            are also often found in individuals affected by TSC. In fact,
       improved treatments; and                                TSC is a leading genetic cause of both autism spectrum
    • Mobilize public and government support.                  disorder and epilepsy.

This annual report provides information on our success         Currently, there is no cure.
reaching these goals, while serving as a reminder that every
minute and every dollar spent finding treatments and a         Nearly 1 million people worldwide are known to have TSC,
cure for TSC could bring about quantum leaps forward in        with approximately 50,000 in the United States. At least two
treatments and cures for other diseases too – like autism,     children born each day in the United States will have TSC.
epilepsy and even cancer.

Our Mission
                                                               While many cases go misdiagnosed and undiagnosed due
                                                               to the obscurity of the disease and the mild form symptoms
                                                               may take in some people, TSC is as common as ALS
                                                               (Lou Gehrig’s Disease) or cystic fibrosis.
The Tuberous Sclerosis Alliance is committed to finding a
cure for tuberous sclerosis complex (TSC), while improving
the lives of those affected by:
     • Developing programs, support services and resource
     • Stimulating and sponsoring research; and
     • Creating and implementing public and professional
       education programs designed to heighten awareness
       of the disease.

The TS Alliance is committed to finding a cure for tuberous sclerosis
complex while improving the lives of those affected.

Programs, Support Services and
Resource Information
Research Program                                                 In September 2009, the TS Alliance sponsored the
                                                                 International TSC Research Conference: From DNA to
                                                                 Human Therapies. The goal of the conference was to bring
The TS Alliance Research Program stimulates and supports         together researchers and health care professionals to discuss
basic, translational and clinical research on the various        our current knowledge of the underlying mechanisms that
manifestations of tuberous sclerosis complex (TSC) to            cause the various manifestations of TSC and what research
further the development of clinical therapies, and ultimately    is needed in the future. The conference was attended by
find a cure for TSC. In 2010, the TS Alliance spent a total      150 people from 14 countries, including Australia, Canada,
of $1,425,738 for TSC research.                                  China, England, Germany, Italy, Japan, Macedonia, The
                                                                 Netherlands, Northern Ireland, Norway, Scotland, Sweden
One of the interesting things about TSC is it affects every      and the United States. Participants included physicians,
person differently. The TS Alliance developed the TSC            genetic counselors, nurses, basic researchers, clinical
Natural History Database six years ago to identify if specific   researchers, parents of individuals with TSC and industry
correlations exist between TSC gene mutations and the            representatives.

                                                                 Support Services
impact of the disease on a person’s health over a lifetime. As
of June 30, 2010, 15 U.S.-based TSC clinics were entering
data with 1,014 people with TSC enrolled in the project.
Of those, 498 are male; 516 are female. Six hundred sixty
four (66%) are less than 18 years old with the youngest 3        TS Alliance Support Services include programs and services
months old; the remaining 350 (34%) research participants        that provide individuals with TSC and their caregivers with
are 18 or over with the oldest 76 years old. Medical             direct access to information, resources and specialists experi-
information is entered in at least 13 areas affected by TSC      enced in the diagnosis, treatment and management of TSC.
(e.g. brain, eyes, heart, kidneys, skin). Epilepsy is entered
as a condition affecting 81% of the research participants        Through the network of 33 volunteer branches of the organ-
enrolled, and 39% of those with epilepsy have a history of       ization, called Community Alliances, local educational and
infantile spasms. Other conditions include: angiofibroma         support group meetings are held throughout the country.
(48%), rhabdomyoma (36%), angiomyolipoma (36%) and
subependymal giant cell tumor (19%).                             In February 2010, the TS Alliance sponsored and under-
                                                                 wrote its annual leadership training for our Community
A poster of the first research findings from the TSC Natural     Alliance Chairs in Washington, D.C. These grassroots vol-
History Database was presented at the American Epilepsy          unteer leaders are truly the heart and soul of our organiza-
Society in December 2009. The TS Alliance provides fund-         tion and their efforts not only account for 50 percent of the
ing to participating clinics to perform data entry; monitors     revenue generated by the organization, but also much of the
the integrity of the database; and utilizes the data to inform   educational outreach conducted across the nation. The
clinical trials and studies.                                     TS Alliance believes strongly in investing in the advocacy
                                                                 program and leadership training to provide skills for our
The TS Alliance also continued its commitment to funding         community leaders to effectively build networks across the
research grants. In 2010, ongoing funding of $844,094            country, to make TSC more visible in their communities, to
supported 15 research projects awarded in previous fiscal        strengthen their special events and to empower volunteers.
years. In addition, a grant of $75,000 was awarded from net
assets through the TS Alliance Rothberg Courage Fund in          In April 2010, the TS Alliance instituted the first of 18
support of a new TSC Neurocognitive Clinical Trial that          town hall meetings held at Community Alliance locations
will recruit study participants in Boston and Cincinnati.        from April to December 2010. These meetings facilitate

Support Services (cont.)

stronger connections with peers, researchers, and clinicians     2010. The TS Alliance also hosted four online discussion
in the community and educate the TSC community about             groups to offer education and support, based on peer types:
clinical trials. The TS Alliance also continued a series of      Adults with TSC, Parents/Caregivers, Teens, and TSC
teleconferences aimed at reaching constituents across the        Professionals.
country with clinical care specialists and scientists from the
convenience of their homes. Eight teleconferences took           Finally, TS Alliance launched an online constituency study
place on subjects including Understanding Neurocognition         to gauge the organization’s performance and determine
and Brain Manifestations in TSC, Genetics and TSC,               constituents’ unmet needs. The specific objectives of the
Kidney Involvement in TSC, Autism Spectrum Disorder              2010 TS Alliance Constituency Study were as follows:
and TSC, TS Alliance Research Update, and TSC Clinical               • To gauge the performance of the TS Alliance in
Trials Updates.                                                         meeting constituents’ needs and living up to its
The Department of Advocacy and Education supports                    • To determine awareness, usage and opinion of various
families and individuals from all over the United States by             TS Alliance resources, programs and events;
attending Individual Education Program (IEP) meetings in             • To gain a better understanding of the challenges faced
person, through SKYPE and via conference calls during the               by individuals and families living with TSC and
IEP season of April to June 2010. There were 16 trainings               identify unmet needs; and
held in collaboration with Community Alliances through               • To prioritize the organization’s strategic goals.
conference call training in special education. The TS
Alliance also co-sponsored an Educational Rights Training        The survey was conducted between February 11, 2010
Program with the Ohio State Department of Education’s            and April 6, 2010 with 759 total respondents. The results
State Support Team Region 7, with more 190 participants          will assist the TS Alliance in evaluating future goals and
attending. Educational advocacy is an important service to       strategies of the organization and the needs of future
TSC individuals and families as they navigate the school         programs and services.

                                                                 Public Education
system and as those affected transition from school into the
community as adults. In addition to the training programs,
the following new educational publications were published
by the TS Alliance: Teacher's Guide: Educating Children
with TSC, Behavioral Issues and TSC and What is Section          The TS Alliance works to heighten awareness of TSC
504?                                                             throughout the general public to broaden the scope of
                                                                 support and understanding beyond TSC individuals and
The TS Alliance Director of Advocacy and Education               their families. In 2010, the TS Alliance used online banner
also maintained an ongoing blog to encourage frequent            outreach on and to increase
and interactive conversations with constituents as they          awareness of the disorder and to drive visitors to our website
encountered challenges on a daily basis and facilitated the      for more information.
Adult Task Force. A survey was sent out to adults to identify
areas of needs for adults with TSC. The Adult Task Force         TSC, as well as the work of the TS Alliance, was also
implemented topic calls in these identified need areas to        highlighted in dozens of local stories generated by our
support our adult population. There were five Adult Topic        grassroots volunteers, ranging from reports on events such
Conference calls held in 2010 to address the needs of adults     as Step Forward to Cure TSC to human interest and health
dealing with TSC. The topics were: “Anxiety in the Work          reports about families and individuals dealing with the daily
Place and School, Part 1 and Part 2,” “Working with Your         struggles of TSC.
Doctor,” and two open forums.
                                                                 Three issues of our national magazine, Perspective, were
In response to requests for support of siblings of children      published in 2010 and sent to 11,800 constituents.
with TSC, the TS Alliance continued to offer online, inter-      Perspective includes articles on research updates, constituent
active chat groups held three times a month based on several     stories, educational initiatives, and community grassroots
age groups. There were more than 30 Sibling Chats held in        activities.

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The TS Alliance also has a prolific social media outreach program
utilizing Facebook, MySpace, YouTube, and Twitter, and our
online discussion groups provide critical information to the newly
diagnosed and others.

The TS Alliance also increases awareness and provides
extensive education though its website via 950,000 to 1.1
                                                               Professional Education
million hits monthly from an average of 18,500 unique
visitors. The TS Alliance also has a prolific social media     Professional Education expands programs targeting health
outreach program utilizing Facebook, MySpace, YouTube,         care providers who offer care for individuals with TSC,
and Twitter, and our online discussion groups provide          medical students, genetic counselors and educators to
critical information to the newly diagnosed and others.        minimize the consequences of ignorance and misinformation.

Government Relations
                                                               In 2010, the TS Alliance presented and participated in
                                                               professional conferences that assisted in educating these
                                                               professionals, including the Child Neurology Society, the
                                                               American Epilepsy Society, and the American Thoracic
Our Government Advocacy Program focuses on educating           Society. In addition, an annual meeting of TSC Clinic
members of Congress about TSC to obtain federal resources      Directors was held during the International Research
to further TSC research and clinical care. In 2010, the        Conference for updates in research, clinical care, and the
TS Alliance grassroots volunteers conducted a March            TSC Natural History Database.
on Capitol Hill resulting in more than 390 personal
Congressional visits and the delivery of information to        The TS Alliance continued to monitor a listserv/online
every Congressional office. These efforts lead to 90 members   discussion group in 2010 that connects professionals in the
of the House of Representatives signing a letter of support    field of TSC care, research and science. There are currently
circulated by Representatives Loretta Sanchez (D-CA) and       50 professionals on this list, which also serves as a resource
Gary Miller (R-CA) and 22 Senators signing a bipartisan        for professionals not familiar with TSC seeking guidance
letter of support circulated by Senators Sherrod Brown         from peers.
(D-OH) and Mike Crapo (R-ID).
                                                               In addition, a monthly online newsletter called TSC Alert
From similar efforts of these volunteers the prior year, the   was sent to nearly 1,000 medical professionals and scientists.
U.S. Congress appropriated $6 million to TSC research          Further, the Director of Advocacy and Education collaborat-
through the Department of Defense Congressionally              ed with national educational networks, such as the National
Directed Medical Research Program in 2010. The TS              Association of Middle Schools, in outreach to educators
Alliance believes the investment in this program has a         in the area of TSC and services needed for appropriate
profound impact on moving new treatments, and ultimately       educational requirements. The Director presented at five
a cure for TSC, forward. The research program administered     professional conferences in Ohio, Pennsylvania and Texas.
from the appropriation is a competitive grant review           These professional presentations provided outreach to more
program. While the TS Alliance receives no direct funding,     than 389 teachers and administers in the educational needs
these Federal research dollars are central to our mission.     of children with TSC. Providing children with appropriate
                                                               educations is the key to individuals having a good quality
                                                               of life.

Photograph by Rick Guidotti for Positive Exposure
Fund Development
Each year, people from across the United States help the           • Comedy for a Cure® Hollywood ran its ninth year by
TS Alliance raise much-needed funds by organizing events             honoring Co-Founders of C&C Market Research,
ranging from garage sales and bake sales or golf tournaments         Craig & Cindy Cunningham. Long time supporter
to walkathons or food and wine events to star-studded                Patricia Heaton served as our host, while comedians
comedy nights. Others raise money on their own through               Ray Romano, Larry Miller, Jeff Allen, and Mike Polk
events like Cookin’ Up a Cure/Pampered Chef Charity                  added comic relief to the evening, which helped raise
Auction, Charity Shrub Sale, The Geneva Lakes Amazing                $250,000.
Race and Crashin’ for the Cause Demolition Derby. No
matter the amount, these efforts continue to help our              • Comedy for a Cure® grew across the country this year.
organization provide crucial services, programs and fund             For the first time we received a national sponsorship
research for all those affected by TSC while increasing              for all five Comedy events from Lundbeck. Boston
awareness in their communities.                                      held their fourth annual event where comedians
                                                                     Tony V., Bob Seibel and Johnny Pizzi and honorary
For fiscal year 2010, special events raised nearly $1.6 million,     chairs Dr. Elizabeth Thiele and Dr. Mustafa Sahin
which represented 50 percent of the TS Alliance’s overall            joined us in honoring Sharon and Tom Gwinn.
revenue. Highlights include:                                         Chicago held their third successful event, where
                                                                     comedian Mark Curry packed the house to help
    • Representatives Gary Miller (R CA), Loretta Sanchez            honor CEO Sean Nolan and Vice President of
      (D CA), Pete Sessions (R TX) and Chris Van Hollen              Epilepsy Beth Dean from Lundbeck. New for 2010
      (D MD) generously loaned their support to the DC               was Atlanta, where comedian Jamie Bendall kicked
      Food & Wine Tasting as Honorary Co-Chairs where                things off while honoring Dr. Robert Flamini,
      we also paid tribute to Billy Tauzin, President and            Director of the new TSC Clinic in Atlanta.
      CEO of Pharmaceutical Research and Manufacturers
      of America (PhRMA).

    • Champions of our cause participated in 35 Step
      Forward to Cure TSC® walkathons across the
      country, raising more than $1 million! This year’s

                                                                   Each year, people across
      National Sponsors included LIDS and Lundbeck,
      and we had our first National Honorary Chair –

                                                                   the U.S. help the TS Alliance
      Julianne Moore.

                                                                   raise much-needed funds by
    • After 15 years our signature event Comedy for a Cure®

                                                                   organizing events — from
      was brought back to New York City where it origi-

                                                                   garage sales to star-studded
      nated. More than 300 families, friends and other
      supporters celebrated in this night of laughter and

                                                                   comedy nights.
      hope, while raising $200,000-plus. Honorary Chair
      Julianne Moore, special guest Rachael Ray and
      comedians Richie Byrne, Seth Herzog, Joey Kola
      and RC Smith helped honor ICAP and Jeff and
      Wendy Sklarin.

Fund Development (cont.)

Events Raising More Than $10,000
Step Forward to Cure TSC® Walkathons                        Tournaments for TSC Champions

   •   Alabama – Carole Pitard                                • Blazin' Buffalo Wild Wings Golf Tournament –
   •   Arizona – Debora Moritz                                  Todd Kronebusch, Justin Banks, Michael O’Connor,
   •   Atlanta – Reiko Donato                                   Nikki Butler and Rachelle Bellmore
   •   Connecticut – Jennifer Waldron                         • Emmory Regan Shapses Golf Classic – Marc and
   •   Chicago (Galesburg) – Karen Johnson-Wenger               Marla Shapses
   •   Chicago (Elk Grove) – Jenny Smiley                     • Kylie’s Hope Golf Tournament – Maria, Neil and
   •   Dallas/Ft. Worth – Scott and Mandy Striegel              Kelly Gibbons
   •   Delaware/Lehigh Valley – Shelly Richards               • Tournament for TSC Champions in Indiana – Mark
   •   Delta Region – Peggy Packard                             and Dawn Koers
   •   Heartland – Cindy and Ryan Blackard                    • Wentworth Charities Golf Classic – Tom and Sharon
   •   Houston – Bill and Taska Fields                          Gwinn

                                                            Other Major Events
   •   Indiana – Susan Campbell
   •   Intermountain West (Utah) – Stephanie and Ian
   •   Metro DC – Nathalie Simoneau                           • 35 Dinners Across America (Out on the Town) –
   •   Michigan – Treasa Bolger and Matt Bolger                 Alexandria Asensio
   •   Middle Tennessee – Amy and James Hobbs                 • 35 Dinners Across America (Food & Wine Tasting) –
   •   New England – Tom and Sharon Gwinn                       Julie Scroggin
   •   New York (Syracuse) – Stephanie Claxton Langstaff      • 35 Dinners Across America (Youmans Family BBQ) –
   •   Ohio (Cleveland) – Michelle Blood                        Bill and Nancy Youmans
   •   Pacific Northwest (Seattle) – Susan Jorski             • Comedy for a Cure® Atlanta – Dee Triemer
   •   Pacific Northwest (Portland) – Nancy Wells             • Comedy for a Cure® Chicago – Jenny and Sandy
   •   Rocky Mountain – Dana Holinka                            Smiley
   •   St. Louis – Rene’ Friedel                              • Comedy for a Cure® Hollywood – Rick and Jennifer
   •   Southern California – Cindy Chernow, Barb O’Neill,       Glassman
       Dawn Redfield and Tresha Bisang                        • Comedy for a Cure® New York – Tommy and Peggy
   •   Upper Midwest – Maria Gibbons                            Lindsey
   •   Western Pennsylvania – Lori Shoup                      • Crashin for the Cause – Joe and Abby Kopf
   •   Wisconsin – Pam Sztukowski                             • DC Food & Wine Tasting – Julie Blum and John
                                                              • Geneva Lakes Amazing Race – Rebecca Melka,
                                                                Rob Keefe, Tim Schnake and Sharon Clark
                                                              • Shrub Sale – Burt and Sue Goodrich
                                                              • Stamp Out TSC – Cristina Fitzgerald
                                                              • Taste of the Twin Cities Food & Wine Tasting –
                                                                Missy Anderson

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Annual Fund – Major Donors
Fiscal Year 2010:                                ICAP Services North America, LLC            Pediatrix
July 1, 2009 – June 30, 2010                     James and Andrea Maginn                     Norman and Dadie Perlov
                                                 The O.J. McDuffie Catch 81 Foundation       Scott and Lori Shoup
President’s Circle
                                                 Questcor                                    Annie Szilagyi

                                                 Chris Stevens                               Tririga
                                                 Scott and Susan Taylor, The Winifred M.     Twentieth Century Fox
Cowlin Family Fund                                Gordon Foundation, Inc                     US Bank
Lundbeck Pharmaceuticals, Inc                    Tepper Family Donor Fund Philanthropic      Variety - The Children's Charity
Tuberous Sclerosis Alliance Endowment Fund        Fund of the Jewish Community Foundation    Wal-Mart Foundation
Wentworth Charities Organization                  of MetroWest                               Martin and Lois Whitman

                                                 UCB Pharma, Inc                             Will and Kay Cooper, WNC & Associates, Inc.

($50,000-$99,999)                                                                            Advocate
                                                 The Gertrude and Philip Hoffman

                                                  Philanthropic Fund of the United Jewish
Novartis Pharmaceuticals Corporation              Federation of Greater Pittsburgh
Robertson Foundation                             Variety                                     600 GS Prop LP

                                                 Karen White                                 A Cure for Cauy
                                                 Jean H. Whittingham
                                                                                             A. Sturm & Sons Foundation Inc

                                                                                             Bruce R. Abrams

America's Charities                                                                          Earl Abramson and Sheila Schlagger
Buffalo Wild Wings                                                                           Howell Adams
Craig and Cindy Cunningham, C&C Market           Accurate Healthcare                         Adelphi University Community
 Research                                        The Arnold Foundation, Inc                  Anheuser Busch Inc.
East Fond du Lac County Chapter of               AT&T                                        Harold and Jeanne Aronson
 Thrivent Financial                              Athena Diagnostics Inc                      Charles and Lucille Asensio
David and Cathy Krinsky                          Mark and Kelly Carroll                      Alexandria Asensio
James T. Medick, Precision Opinion               Clarcor Foundation                          Asphalt Milling Services Inc.
National Institute of Neurological Disorders     Comcast Cable                               Jamal Aziz
 and Stroke (NINDS), National Institute of       Cyberonics, Inc.                            Baird Foundation, Inc.
 Arthritis and Musculoskeletal and Skin          Leonard B. Davis                            Bank of America United Way Campaign
 Disease (NIAMS), the Office Of the              Richard and Lori Day                        Bank of North Georgia
 Director, National Institutes Of Health         Michael and Rita DiDomenico,                Adrian Banner
 (OD), the Eunice Kennedy Shriver National       DiDomenico Packaging, Co., Inc              Best Buy Co., Inc.
 Institute of Child Health & Human               Tim and Kathi Dills                         Amy Beyer
 Development (NICHD), the National               Chris and Joy Dinsdale                      Biotechnology Industry Organization
 Institute of Diabetes and Digestive and         Intellisurvey                               William and Michelle Blood
 Kidney Diseases (NIDDK) and the National        The Elizabeth Humbracht Revocable Living    Jon and Shelly Bloomquist
 Cancer Institute (NCI)                            Trust                                     Andrew and Mary Bott
Lawrence and Diane O'Friel                       Kenvo Foundation                            Bright House Networks, LLC
Harold Simmons Foundation                        MarketCast                                  Broadpoint Capital, Inc.
Marc, Marla, and Emmory Shapses, ERS             Abe and Celia Mastbaum                      Broadpoint Gleacher
 Charitable Foundation                           Honey and the late Ralph Amado, Maurice     The late Gertrude Brown
Tuberous Sclerosis Canada Sclerose Tubereuse       Amado Foundation                          Andrew and Elizabeth Buchsbaum
Bill and Kristina Watts, Watts Charitable Fund   Mark and Karen Mausner, Mausner Plastic     Pablo Burbridge

Protector ($10,000-$19,999)
                                                   Surgery Center                            Butler Hyundai
                                                 Metlife Center for Special Needs Planning   Maureen Cannon
Charles & Mildred Schnurmacher                   Robert and Margaret Middleton               Cartier
 Foundation, Inc.                                Moody's Foundation Matching Gift Program    Cavarocchi Ruscio Dennis Associates, LLC
Michael and Janie Frost                          Jim and Debora Moritz, Cake Arts, Inc.      Centene Charitable Foundation
Genesco                                          John and Carol Nicholson                    Cincinnati Friends of Charity, Inc.
James and Jessica Lawler, Glenn N. Howatt        Steven Noss                                 Richard and Susan Clack
 Foundation                                      Brian and Sandra O'Brien                    Sue Clark

Annual Fund - Major Donors (cont.)

Scott Clarkson                              Greater Kansas City Community              Pasqualina Lyons
Cliff and Deborah White Family Fund          Foundation & Affiliated Trust             Kristin MacMannis
Cobb EMC                                    Miriam S. Green                            Audrey Malesky
Patricia Cochran                            Griffin & Murphy, LLP                      James and Michelle Manco
Cynthia Comeaux                             Frank Gritti, Jr.                          James Nelson and Nan Martin
Community Health Charities                  Jan Hamilton                               Bernabe and Lucy Martinez
Linda G. Connors                            Rob and Cindy Hammerquist                  Herbert and the late Sheila Marton
County of Los Angeles                       Dennis Hanson                              Ted and Peggy Mastroianni
James and Leslie Craige                     Tim Hardy                                  John McBride
Ed and Dori Crofts                          Richard and Heather Hall Hayden            Peter Mcby
Robert and Elizabeth Cullins                Anne Heilman                               Karen McCall
Cornelius DenHarder                         Herbst Foundation                          Ryan McFadden
Ann Despirito                               Higgins MobileHomes, Inc.                  Robert Melcher
Orrin Devinsky, N.Y. Epilepsy & Neurology   Sean Hitleman                              Merck Partnership for Giving
 PLLC                                       Jeffrey and Karen Hoersch                  Merrill Lynch
Diane and Howard Wohl Family                Jeffrey and Laura Hollingsworth            Miami Childrens Hospital
 Foundation                                 Hollingsworth, LLP                         Carol and the late Michael Michael
Digital Millennium Wireless, Inc            Erin Huemann                               Michael Bill Avner Memorial Fund of
Discavage Family Foundation, Inc            Thomas and Kelly Hurst                      The Pittsburgh Foundation
John DiSpigno                               Horn Research Support                      Minnesota Epilepsy Group, PA
Margaret Dolan                              John C. and Alice Hulbert                  Mistler Family Foundation
Rich and Reiko Donato                       Mark H. Hyman and Sheryl Neuman            David and Jan Mintz
Doreen Discavage                            IBM Employee Services Center               Greg and Laura Mlynarczyk
Dottie Dorris                               Icee of Atlanta, Inc                       Timothy Mullen
Denise Dowling                              Inspiration Ministries                     Michael Murphy
Downey Publishing Inc.                      JD Rush Corporation                        William Nasser
Dale Ebel                                   Joan and Stanley Worton Philanthropic      Jay and Kimberly Nerheim
Ebusiness Strategies, LLC                    Foundation Fund                           Network For Good
Edison International                        Ken and Shonnie Johnson                    New Bridge Baptist Church
Dick and Athena Eitel                       Channing Johnson                           Richard and Sharon Nicely
Elio's Fitness                              Bobby Jones                                Nokia Matching Employee Gifts Program
EMC Electrical Inc                          William and Melissa Joyce                  Norgren Family Fund
John P. and Kathleen Ewonus                 Arnold and Carol Wiggins Kamm              North Texas Christian Foundation
Brian Farley                                Kris Kang                                  John P. O'Brien
Scott and Jill Feinstein                    Peter Katopes                              Olsen & Olsen LTD
Steven Ferkingstad                          Kent and Sandra Ketchum                    William R. Orr
Joseph and Hilary Feshbach                  Keybank                                    Richard Packard
Fidelity Brokerage Services, LLC            Bob Kiltie                                 Sejal Parikh, M.D.
Brian T. Finn                               Ken and Beth Kocher                        PASCO
Thomas Flanagan                             Kohl's                                     Mike Patrick
Steve and Cindy Fowler                      Michael Komson                             Muriel Pattis
Mark and Judy Fox                           Laura Lackey                               Paul Frank Industries
Bernard D. Friedman                         Ladies of Unico - Kearny, NJ Chapter       Emil and Kathleen Pavlik
Greg Froelich                               Jeffrey Lapin                              PCC Structurals, Inc.
Jose Fundora                                Roger and Laura Lavan                      Pfizer Foundation Matching Gifts Program
Carol Garneau                               Lawrence Livermore National Laboratories   Pharmaceutical Research and Manufacturers
Gerald Oppenheimer Family Foundation        James Leahy                                 of America
Rick and Jennifer Glassman                  Jean Leonard                               Philadelphia Indeminity Insurance Company
Robert Goble                                Peter Liechty                              Pinnacle Bancorp Inc.
Thomas Grace                                Leroy Lind                                 Premier Pipe
Robert Graham                               Tommy and Peggy Lindsey                    Gilles Pinsonneauit
Charles Graham                              Greg Linsin and Julie Blum                 Andrew and Maureen Piotrowski
Grainger Matching Gifts Program             Derek Lively                               Clark and Temple Poche
Donn Gray                                   George Lowe                                Allan Price
William and Sarah Gray                      Tammy Lynk                                 Prime Procurement Group, LLC

       10                                                                                 800.225.6872
Prudential Foundation Matching Gifts        Rob J. and Loni Thurston                  Kandiah Arulmoli
Roger Quick                                 Tom and Lesley Todaro                     AT&T United Way Employee Giving
Gary Raak                                   David A. and Charlene Torchia              Campaign
John C. & Cheryl Raiss, Raiss Family        Michael and Dee Triemer                   Peter Augustine
  Endowment                                 Gary Twiggs                               Auto Body & Glass
Heather Raymon, M.D.                        Union Pacific Railroad Co                 Michael and Mary Aycox
Ernest Reisinger                            United States Treasury                    Baker Employees Combines Charites
Revere Advisors                             United Way of Central Maryland            Ron and Laura Ballard
Richard Van Lunen Charitable Foundation     United Way of Orange County               Bank of Oklahoma
Andrew and Sheila Rintels, Rintels Family   United Way of The National Capital Area   James R. Barash
  Foundation                                United Way of Tri-State                   Keith Barfield
Paul Rivello                                University of Chicago                     Joanne Batey
RLC Advisors LLC                            Alan and Nancy Vogel                      Michael Beber
Nilsa Roberts                               Kevin and Melanie Vogel                   John O. Beck
Ramona Roberts                              Philip Walsh                              Brett Beebe
John C. Roeser, III                         Victor Wang                               Bernard Beem
John Rogers                                 William & Corinne Ward                    Anna Belli
Christopher and Kari Luther Rosbeck         Watkins Meegan LLC                        Joshua Bennett
Rowley Portraiture                          WebMD                                     Nick and Sharon Berchin
Sam's Club Foundation                       Lori Weingarten                           Robert and Kelly Best
Jessica L. Sanders                          WellPoint Foundation                      Kevin Beveridge
Raman Sankar, M.D.                          Wells Fargo Bank                          Kalpana Bhatia
Stewart Satter                              West Bend High Schools                    Walter Birdsall
Abe Schlabach, Arizona Panoramic            West Chicago Garden Club                  Kevin Bittel
Landscaping LLC                             Westbury Fire Dept Hose Co No 1           Daniel Bloomstein
Julia Schluraff                             Jack and Jeanne Whitaker                  Ben Bossom
Jack D. Scott                               Joe White, White & Weddle, PC             Dale Bowersock
Dave Senger                                 Michael Whitmore                          Pamela Bozorgui
David E. Shaffer                            Gene Wiggins                              George and Laura Braunstein
Henry Shapiro and Christy Hobart            Peter Wilby                               Howard and Adrienne Brewer
James and Judy Shoulak                      Paul and Leslie Wolfenbarger              Bridgeport Dental, LLC
Mary Shurtz                                 Michael Wong and Cecilia Hsein-Tsing Yu   Bristol Myers Squibb Foundation Matching
Jeff and Wendy Sklarin                      Kirby and Jennie Woodard                   Gift Program
Eric Small, M.D.                            John and Laurel Wrynn                     Josephine Brooks
Johnny Smith                                Joseph and Deborah Yohn                   Walter Brooks
Joseph and Kathleen Smith, III              Cecelia Yorke                             Harry Broome
Ronald Smith                                Mark Zeitchick                            Brothers Pizza Express, Inc.
Kathy Smith                                 Evan Zuckerman and Andy Bernstein         Joe T. and Donna Bryant

                                            Champion ($500-$999)
Stephen Smoot                                                                         Catherine Busel
Daniel L. Smytka                                                                      Bob and Susan Campbell
Sonoco Flexible Packaging Charitable Fund   435 North Fairfax, LLC                    Evelyn Campbell
Rocco Spinoso                                                Bruce and Betty Canfield
Jerrill and Heidi Sprinkle                  John C. Adams and Nancy Ory               Frank M. and Barbara Capone
Carl and Rosemary Sterk                     Adobe Systems Incorporated                Joe and Mattie Carillo
Stirring Dirt Racing LC                     Advanced Radon Mitigation, Inc.           Liam and Julie Carroll
Stolen Souls                                The Allstate Foundation                   Allan S. Chandler
Stanley Survilas                            Ambac Financial Group                     Dan and Cindy Chernow
Ed and Sandra Swanson                       Steven Ambus                              Chicago Title Insurance Company
Michael A. Tama                             American Endowment Foundation             Blake E. Christian
Tandem Printing, Inc                        Ameron                                    Clorox Company Foundation
Jimmy Tavis                                 Amgen Foundation                          Terry Coil
The Bank of Edwardsville                    Salvatore Apa                             John S. Conner
The Busch Firm                              Apache Corporation                        Steve and Kathleen Conrad
The Josephs Foundation                      Steve Aranda                              Juliana Coura
Sean and Kelly Thomann                      Peter and Deborah Aronson                 Covidien Matching Gift Program

Annual Fund - Major Donors (cont.)

David Cowlin                              Griffin Properties of Fort Smith, Inc      Kiss Designs
Geraldine Cowlin                          Frederick and Jennifer Gross               Kiwanis Club of Marietta Lost Mountain
Paul W. Craven                            Robert W. and Kathryn A. Groves            Golden K
Edward Crino                              Henry and Lucy Hahn                        John Kizer
Liz Cultraro                              Kathryn Hair                               Steve Knight
Jack Cunningham                           Lukas Hales                                Justin Knight
Dalio Family Foundation Inc               Keith and Andrea Hall                      Knoxville Junior High School
Karen Sue Damico                          Elizabeth Halloran                         Christopher Koch
Mary Day                                  Madelyn Hammond                            Lisa Kopitzke
Andy Dean                                 William Hanks                              Abraham Krantz
Elida Delrio                              Mark and Terry Hapstack                    Melania Krinsky
M. Demaio Development                     Karen Hathaway                             Todd and Debi Kronebusch
Mr. John Dexter                           Heather Joy Memorial Fund                  Robert O. and Cynthia Kupper
The Double Q Foundation Inc               Joseph Helfgot and Susan Whitman-Helfgot   Young Kwak
Richard Douglas                           Rick Heltzel                               Gordon and Deb Lang
Peter Dressel                             Dave and Mary Henke                        Lathrop & Gage LC
Rashmi Dubey                              Lisa Hiday-Baca                            Fabian Latocha
Neil and Amy Dublinske                    Robert E. Higgins                          Lawrence Smith Foundation
Bob and Linda Dugan                       Robert and Brenda Higgins, Jr.             Lebaron & Carrol Mortgage LLC
Judge William Dunbar                      Douglas Hinkle                             Rodeny and Caroline Lenz
Dunwoody Speech                           C. Dana Hobart                             Ernest Letlow
Doug Durbin                               Carol D. Hobart                            Ruth Litovsky
Jerome Eck                                G. Dana and Vicky Hobart                   Local Independant Charities of America
Allyson Edwards                           James and Amy Hobbs                        Martin E. Lush
Todd and Teresa Embury                    Torbjorn Hodne                             James D. Lynch
EMJ                                       Patti Holt                                 James D. and Nancy Lynch, Sr.
Marja Engel                               Chris Holubowicz and Pam Sztukowski        Steve Lynk
ERES                                      Hospice Campassus                          Joseph A. Magyar, Jr.
David Erie                                Todd Huemann                               Robert and Barbara Malatesta
Ken and Linda Escobar                     Jonathan Hyman and Susan Hoffman           Arien Malec and Kristin Barr
ExxonMobil Foundation                     Shirley Hyman                              Amit Malhotra
Kerry Falcone                             Inexco Enterprises, LLC                    Charlie Mancuso
Timothy S. Fedewa                                                   Chad Manzer
Arthur L. Fisher                          Insulation Products Corp                   Michael Marcus
Michael and Jacqueline Flaherty           J & H Asset Property Mgmt. Inc.            Ross Margolies
Kasey Flicker                             Jacobs Trading Company                     Herman F. Marlow, Jr.
The Florence Mauboules Charitable Trust   Rochelle Jenkins                           Martin Pediatric Dentistry, LLC
William and Vera Flynn, Jr.               John Bardgett & Associates, Inc            Barbara Martin
Foodonics International Inc.              Brooke Johnson                             Kevin and Carrie Martin
Forest Laboratories, Inc                  Virginia Johnson                           The Matthew and Marie Hopkins
Solon Fotis                               Daina Johnson                              Foundation
Maureen Frear                             Ralph L. Johnson, Jr.                      MC Glynn Hays & Co Inc
Michelle Freeman                          Johnson & Johnson                          Allen McBride
Barb Fryberger and Carole Fryberger       Matt and Susan Jorski                      Robert E. McBride
R.R. Gaglani                              Jay and Deborah Julow                      Charles and Denise McCain-Tharnstrom
Gap Foundation Gap Giving                 Michael L. Junk                            Claire M. McCarthy
Alfred and Johanna Garzino, Jr.           Kym Karath                                 Charles and Tina McCraw
GB Tubulars Inc                           Stewart and Carol Katz                     Kevin McGarry
The GE Foundation                         John Kavanagh                              Raymond and Alice McKeighan
Gem Environmental, Inc                    Yoshi Kawashima                            Missy McKiernan
Eugene C. Gilder                          Jeffrey Kazanoff                           Michael S. McLaughlin
Michael and April Godfrey                 Robert and Cassie Kelle                    Linda Meints
Golf Headquarters                         Kids Abilities                             Robin J. Meltvedt
Josh D. Gordon                            Alison Kirby                               Brandon Merrill
Michael and Geri Greenberg                Kirkland and Ellis Foundation              Melinda Merryfield-Becker

      12                                                                                800.225.6872
Richard C. Mihm                          John and Jordan Richards                    Andrew and Helen Triemer
Michael J. Miller                        Richmond Rebar, LLC                         Sidney Yee and Helen Tsai
Michael and Cathy Miller                 Richo Printing/ Mount Pisgah                Gordon T. and Heather Ueland
Mission Fish                             Dean J. Ripley                              United Way of the Bay Area
Mix 1                                    Lorena Risch                                United Way of the Capital Area
MJB Properties                           Robert A and Jo Ellen M Davidson Fund       United Way of Delaware
Modular Devices, Inc.                    Patrick J. Roche, III                       United Way of Greater Greensboro
Laurie S. Moller                         Daniel and Kiana Rodrigues                  United Way of Greater Los Angeles
Tim Monkhouse                            Gerardo Rodriguez                           United Way of San Diego County
Mitchell Montalli                        Jonathan and Bonnie Gould Rothberg          United Way of Southeastern Michigan
Ted and Barbara Montgomery               Todd Runyan                                 United Way of Southeastern Pennsylvania
Stephen Mroz                             Terry and Cynthia Rust                      US Cellular
Tawnia Mullerleile-Garten                Mildred M. Sanders                          Norvyn Uytiepo
Gianluigi Mussinelli                     James J. Santos, Jr.                        Adair Vasilovich
Myers Company, Inc                       J.B. Sarver                                 Douglas Waits
National Association of Theatre Owners   Mark Scarpelli                              Michael P. Walsh
Anne Nativi                              David and Amy Schenkein                     Patrick Walsh
Ron Neimeth                              Vincent and Cheryl Schillig                 Washington Arbitration & Mediation
Bales W. Nelson                          Jerry and Teresa Schlandt                    Service
Gerald Nerheim                           Schneider Electric/Square D Foundation      Washington Sports & Entertainment
New Bees                                 Brad Schwartz                               Washington Street School
Tri. H. Nguyen                           Robert T. and Mary Ellen Scott              Doug Wasserman
Robert and Jennifer Nicholson            Ben and Beth Sehlhorst                      Dennis Watts
Niehaus Advertising Specialties          Seitlin and Company                         James Webb
Sean Nolan                               Thomas and Elizabeth Sharp                  Catherine Webster
Nonprofits Mutual RRG                    Shawntech Communications                    Ira Weiner and Diane Wayne
Norwood School PTA                       Ukrit Siriprusanan                          Westbury Fire Dept Hook & Ladder
Ms. Melissa Oakes                        Kristen Skodras                             Westbury Fire Dept Hose Co. No. 2 General
Robert Oglesby                           Jon Small                                    Fund
Old Brookville Police Benevolent         Doug Smith                                  Timothy M. Whitaker
Association                              David Sorboro                               Ricky Wiggins
Fredricka Older                          Robert B. and Natalie Sprinkle, Jr.         Daniel Wilhelm and Courtney O'Malley
Ole Country Smokehouse                   Robert J. Sprinkle                          Otto Wilson
Jack and Barbara Olson                   SSM Health Care of Oklahoma                 Ben and Angie Windham
Shamsuddin Panjwani                      John and Carolyn Starling                   The Winston-Salem Foundation
George and Joy Pantelis                  Marcus Stearns                              Woodland School District 50
Dennis Pantelis                          Sheila Steele                               Thomas W. and Eleanor Woods
David and Penney Parkes                  Laurence and Ellen Steiner                  Kevin and Sarah Wright
Robert Peiffer                           Joe Stockdale                               Joyce Wu
Pelham Brokerage, Inc.                   Ronald J. Stone                             Harold Xavier
Dennis M. and Kimberly Pidherny          Swederski Concrete Construction Inc.        Mr. Kevin Yoder
Lisa Pinto                               Joe Tardibuono                              Elaine Zabala
Michael Piuze                            Stephen M. and Winifred Tart                Edward Zapp
Thomas Pivec                             James R. and Carol Taylor
Plains Marketing, L.P.                   Texas Scottish Rite Hospital for Children
Leon K. Poche                            The Fiftieth Anniversary Foundation
Joszef and Anna Postma                   The Starr Foundation
Penelope Pratt                           The Standard
Jason Pritchett                          Jeff Theis
Susan C. Prosek                          Wallace R. Thomas
Brain and Kerry Quinn                    Terry Thornton
Jeremy Rasberry                          Todd Family Foundation
Doug and Kay Rawlings                    Tomahawk Mfg., Inc.
Pat Reiten                               Sheila Tortorici
RFP Residential LLC                      TradeLink LLC

Major Gifts in Kind                            Gotham Magazine                  Paul Frank Industries
Buzz Aldrin                                Johnny Gresham                   Phenominos
Jeff Allen                                 Rich Guidotti                    Mike Polk
AirTran                                    Hagg Press                       Dr. and Mrs. David Poutasse
American Idol                              Rob and Cindy Hammerquist        John Poutasse and Mara Flynn
Animal Restaurant                          Chris Hawkey, KFAN-AM 1130       Rachael Ray
Bardi Catering, Inc                        Patricia Heaton and David Hunt   John Rogers
Kevin Beveridge                            Seth Herzog                      Ray Romano
Boulevard3                                 Hollywood Roosevelt Hotel        Richo Printing/Mt. Pisgah
Bradford Renaissance Portraits             Mark Hyman                       Jonathan and Bonnie Gould Rothberg, The
Brooks Sports Inc                          Ingram Design Studio              Rothberg Institute for Childhood Diseases
Buffalo Wild Wings                         Intellisurvey                    Rowley Portraiture
Richie Byrne                               Kahlen Studios                   Marc, Marla, and Emmory Shapses, ERS
Capitol File                               Melina Kanakaredes                Charitable Foundation
Damon Casatico, Charity Benefit Auctions   Keurig, Inc.                     R.C. Smith
Clothes Off Our Back Foundation            Joey Kola                        Heidi Sprinkle
Mark Curry                                 L.A. Confidential                Annie Szilagyi
Dr. Mauricio Delgado                       Sam Lancaster                    The Honorable Billy Tauzin
Diageo                                     LIDS                             Washington Sports & Entertainment
Dunwoody Speech                            Mark and Karen Mausner           Dr. Nicole Winner
Edina Kiss                                 Larry Miller
Eggspectation                              Minnesota Vikings                The TS Alliance strives to correctly recognize
Eleni's                                    Mitch-Stuart, Inc.               all donors. We apologize in advance for any
Dr. and Mrs. William Flynn                 Mix 1                            errors, omissions or misspellings in this
Tricia Gerum                               Montage Beverly Hills            annual report. Please call our office at
Leeza Gibbons                              Julianne Moore                   (800) 225-6872 with any corrections.
Rick and Jennifer Glassman                 Morton's, The Steakhouse
Golf Headquarters                          Krista Osmanski
Endowment Fund
The Tuberous Sclerosis Alliance Endowment           Scott and Jan Burton              Robert and Mary Ellen Scott
Fund is a separate fiduciary organization           Marguerite Cleveland              Fred and Ilse Smith
specifically chartered to receive gifts that will   John and Katherine Conrad         John and Janine Steenman
be invested to generate an income stream that       Will and Kay Cooper               Kathy Trapp
will help fulfill the mission of the TS Alliance.   Richard and Reiko Donato          Alma A. Tutrone*
The endowment fund will ensure the TS               Cindy Fowler                      Jim and Nancy Weir
Alliance has an ongoing source of funding to        David and Laura Grimes            Philip and Marion Winsor
better serve those touched by tuberous sclerosis    Robert W. and Kathryn A. Groves   Barbara K. Witten and William R. Bradley
complex through research, support services and      Shannon Hackley                   Frieda K. Zimmerman*
education.                                          Jeffrey and Lisa Hargreaves       *deceased

Advancement Society ($25,000-$99,999)                                                 Endowment Named Funds
                                                    Clara Harwell
                                                    James and Amy Hobbs
Ken and Shonnie Johnson                             Ken and Shonnie Johnson           For gifts of $25,000 or more (with a pledge
Philip and Marion Winsor                            Arnold and Carol Kamm             payable over five years), a donor has the

Century Society ($10,000-$24,999)
                                                    Steve and Laura Kozisek           opportunity to name a fund in honor of
                                                    David and Cathy Krinsky           someone. We are deeply grateful for the
Irene B Rothberg                                    Mark Leal                         following named funds:

Investment Society ($500-$4,999)
                                                    Phyllis Leist
                                                    Craig T. Lewis*                   Megan Augustine Fund
West Chicago Garden Club                            Doug and Linda Loftus             John A. Conrad Jr. Memorial Fund
Magdalena Lutsky                                    James Lynch                       Carrie Cooper Memorial Fund
Jon Myers                                           Donna McGaha                      Lauren E. Krinsky Fund

The Eternal Flame Society
                                                    David and Jan Mintz               The Lawler Fund
                                                    Maria Shanon Munoz-Chargoy        Cade Scott Fund
Anonymous                                           David and Penney Parkes
Michael and Millicent Augustine                     Jeffrey and Bonnie Rickert        Please remember the Tuberous Sclerosis
Jeffery and Gloria* Benham                          Pat and Jennifer Rolfes           Alliance Endowment Fund when planning
Matt Bolger                                         Kari Luther Rosbeck               for the future by designating a gift to the
Treasa Bolger                                       Dave and Nancy Scott              organization.
Photograph by Rick Guidotti for Positive Exposure
TS Alliance Board of Directors

Celia Mastbaum, Chair                 Steven Goldstein
Marlboro, NJ                          Wesport, CT

David Parkes, Vice Chair              Ron Heffron
Fairfield, CT                         Irvine, CA

Henry Shapiro, Secretary              Elizabeth Henske, MD
Santa Monica, CA                      Boston, MA

Rita DiDomenico, Treasurer            Linda Jackson
Staten Island, NY                     Miami Beach, FL

Cathy Krinsky, Immediate Past Chair   Tommy Lindsey
Laguna Beach, CA                      Staten Island, NY

Julie Blum                            Alan Marshall
Potomac, MD                           Scottsdale, AZ

Matt Bolger                           Kathy Mayrsohn
Lansing, MI                           Miami, FL

Mark Carroll                          John Nicholson, MD, MBA
Saratoga, CA                          Greenwich, CT

Wilfred Cooper, Sr.                   Courtney O’Malley
Newport Beach, CA                     New York, NY

Peter Crino, MD, PhD                  David Schenkein, MD
Philadelphia, PA                      Cambridge, MA

Reiko Donato                          Chris Sheffield
Roswell, GA                           North Hollywood, CA

Terry Elling                          Judith Shoulak
Fairfax, VA                           Corcoran, MN

William Ford                          Elizabeth Thiele, MD, PhD
Chevy Chase, MD                       Boston, MA

Janie Frost, RN                       Rob Thurston
Woodbury, MN                          Provo, UT

Jennifer Glassman
Los Angeles, CA

Leadership (cont.)

TS Alliance Endowment Fund
Board of Directors
                                                Jenny Smiley
                                                Director of Community Outreach

                                                Katie Smith
Rob Thurston, Chair                             Science Coordinator
Provo, UT
                                                Dee Triemer
MaryJane Mudd, Secretary                        Community Outreach Manager
Houston, TX
                                                Vicky H. Whittemore, Ph.D.
Robert Groves, III, Treasurer                   Vice President & Chief Scientific Officer

                                                Community Alliances
East Lansing, MI

Michael Augustine
San Gabriel, CA
                                                TS Alliance of Arizona
Mark Carroll                                    Debora Moritz, Chair
Saratoga, CA
                                                TS Alliance of Atlanta/North Georgia
William Ford                                    Wendi Scheck, Chair
Chevy Chase, MD
                                                TS Alliance of the Carolinas
Michael Thurston                                Christi Davis, Co-Chair
San Francisco, CA                               Karen Sims, Co-Chair

TS Alliance Staff
                                                Amy Quintana, Co-Chair

                                                TS Alliance of Connecticut
                                                Jennifer Waldron, Chair
Kari Luther Rosbeck
President & CEO                                 TS Alliance of the Dallas/Ft. Worth Area
                                                Tricia Bodnar, Co-Chair
Gail Alexander
                                                Maria Cole, Co-Chair
Senior Manager of Operations
                                                TS Alliance of the Delaware/Lehigh Valley
Linda Gorsuch
                                                Cindy Richards, Co-Chair
Senior Director of Development
                                                Shelley Richards, Co-Chair
Tyler Hoffman                                   Liz Saadoun, Co-Chair
Development Coordinator
                                                TS Alliance of Florida
Dena Hook                                       Joy Graydon, Chair
Director of Advocacy & Education                Vanessa Y. Vazquez, Vice Chair

Jaye Isham                                      TS Alliance of the Delta Region
Senior Director of Marketing & Communications   Samantha Glass, Chair
                                                Julie Comeaux, Vice Chair
Megan McNutt
Accounts Receivable Associate                   TS Alliance of Greater Alabama
                                                Carole Pitard, Co-Chair
Jo Anne Nakagawa                                Shirley McAfee, Co-Chair
Director of Clinical Projects                   Donna Ross, Vice Chair

Mary Jane Perraut                               TS Alliance of Greater Chicago

       18                                                                800.225.6872
TS Alliance of Greater Kansas City               TS Alliance of the Rocky Mountain Region
Amy Dublinske, Chair                             Dana Holinka, Chair
Lisa Hart, Vice Chair
                                                 TS Alliance of Southern California
TS Alliance of Hawaii                            April Cooper, Co-Chair
Tricia Gerum, Chair                              Christy Hobart, Co-Chair
                                                 Julia K. Cohen, Vice Chair
TS Alliance of the Heartland
Cindy and Ryan Blackard, Co-Chairs               TS Alliance of St. Louis
                                                 Rene’ Friedel, Chair
TS Alliance of Houston
Lucy Martinez, Chair                             TS Alliance of the Upper Midwest
                                                 Missy Anderson, Co-Chair
TS Alliance of Indiana                           Jim Hable, Co-Chair
Susan Campbell, Chair
                                                 TS Alliance of Virginia
TS Alliance of Intermountain West                Kathy Henkel, Co-Chair
Stephanie and Ian Bobbermin, Co-Chairs           Adrianne Cohen, Vice Chair
Julie Fleming, Vice Chair
                                                 TS Alliance of Western PA
TS Alliance of Metro DC                          Mike Seman, Chair
Rob and Lisa Moss, Co-Chairs
                                                 TS Alliance of Wisconsin
TS Alliance of Middle Tennessee                  Kristin Champagne, Chair

                                                 Corporate Advisory Board
Amy and James Hobbs, Co-Chairs
Elizabeth Hallauer, Vice Chair

TS Alliance of Michigan
                                                 Julianne Moore, Honorary Chair
Treasa Bolger, Chair
                                                 Rich Denness
TS Alliance of Nevada
Kathleen Kingston, Chair                         Orrin Devinsky, M.D.
TS Alliance of New England
                                                 NYU Epilepsy Center
Karin Sullivan, Chair
Jeffrey Hargreaves, Vice Chair                   Gail Gershon
                                                 Director, Employee Engagement
TS Alliance of the New York Metro & New Jersey
                                                 Gap Foundation, Gap Inc.
Peggy and Tommy Lindsey, Co-Chairs
                                                 Neil Hawkins
TS Alliance of Northern California
                                                 Ken Kocher
TS Alliance of Ohio
Carl and Lola Centeno, Co-Chairs
                                                 Hat World, Inc.
Jim and Nancy Weir, Co- Vice Chairs
                                                 Jim Maginn
TSC Online Community Alliance
Maureen Reyes, Chair
                                                 Watt Companies
TS Alliance of the Pacific Northwest
                                                 MaryJane Mudd
Susan Jorski, Chair
Lisa Bennett, Vice Chair
                                                 Full Tilt Communications

Leadership (cont.)

Sean C. Nolan                                   Diane C. Chugani, PhD
                                                Children's Hospital of Michigan
John Thorpe Richards, Jr.                       Department of Neurology
Trout Cacheris, PLLC                            Detroit, MI
                                                Specialty: Pharmacology
James S. Richter
Partner                                         Harry T. Chugani, MD
Winston & Strawn LLP                            Children's Hospital of Michigan
                                                Pediatric Neurology
Marc Shapses
                                                Detroit, MI
Executive Managing Director
                                                Specialty: Pediatric Neurology
Studley, Inc.

Professional Advisory Board
                                                Petrus de Vries, MD, PhD
                                                Cambridge University
                                                Department of Psychiatry
Peter Crino, MD, PhD; Chair                     Cambridge, UK
University of Pennsylvania School of Medicine   Specialty: Psychiatry and Psychology
Department of Neurology
PENN Epilepsy Center                            Orrin Devinsky, MD
Philadelphia, PA                                NYU Epilepsy Center
Specialty: Adult Neurology                      New York, NY
                                                Specialty: Neurology
Stephen Ashwal, MD
Loma Linda School of Medicine                   Francis J. DiMario, Jr, MD
Department of Pediatrics                        Connecticut Children’s Medical Center
Loma Linda, CA                                  Division of Pediatric Neurology
Specialty: Pediatric Neurology                  Hartford, CT
                                                Specialty: Pediatric Neurology
E. Martina Bebin, MD
University of Alabama at Birmingham             Michael S. Duchowny, MD
Department of Neurology                         Miami Children's Hospital
Huntsville, AL                                  Department of Neurology
Specialty: Pediatric Neurology                  Miami, FL
                                                Specialty: Pediatric Neurology
John Bissler, MD
Children's Hospital Medical Center              David W. Dunn, MD
Division of Nephrology and Hypertension         Riley Hospital for Children
Cincinnati, OH                                  Indiana University School of Medicine
Specialty: Pediatric Nephrology                 Department of Neurology
                                                Indianapolis, IN
Peter Black, MD, PhD                            Specialty: Pediatric Neurology & Psychiatry
Children's Hospital
Department of Neurosurgery                      Nancy J. Elling, BSN, RN
Boston, MA                                      Children’s National Medical Center
Specialty: Neurosurgery                         Department of Neurology
                                                Fairfax, VA
Candida Brown, MD                               Specialty: Nursing
Children’s Hospital Oakland
Division of Neurology
Oakland, CA
Specialty: Pediatric Neurology

      20                                                                 800.225.6872
Kevin C. Ess, MD, PhD                        Janine Lewis, MS, CGC
Vanderbilt University                        Aspen Systems
Department of Neurology                      Rockville, MD
Nashville, TN                                Specialty: Genetic Counseling
Specialty: Pediatric Neurology
                                             Raymond S. Kandt, MD
David H. Ewalt, MD                           Johnson Neurological Clinic
Urology Clinic of North Texas                High Point, NC
Dallas, TX                                   Specialty: Pediatric Neurology
Specialty: Urological Surgery
                                             Bryan H. King, MD
Robert Flamini, MD                           Children’s Hospital
Children’s Epilepsy Center                   Department of Psychiatry
Atlanta, GA                                  Seattle, WA
Specialty: Pediatric Neurology               Specialty: Child Psychiatry

David Neal Franz, MD                         Susan Koh, MD
Children's Hospital Medical Center           University of Colorado, Denver
Department of Neurology                      Division of Pediatric Neurology
Cincinnati, OH                               Denver, CO
Specialty: Pediatric Neurology               Specialty: Pediatric Neurology

Michael D. Frost, MD                         Michael Kohrman, MD
The Minnesota Epilepsy Group, P.A.           University of Chicago
Saint Paul, MN                               Department of Pediatrics
Specialty: Pediatric Neurology               Chicago, IL
                                             Specialty: Pediatric Neurology
Patricia A. Gibson, MSW
Wake Forest University School of Medicine    David J. Kwiatkowski, MD, PhD
Baptist Medical Center                       Department of Medicine
Department of Neurology                      Brigham and Women’s Hospital
Comprehensive Epilepsy Information Service   Harvard Medical School
Winston Salem, NC                            Boston, MA
Specialty: Social Work                       Specialty: Genetic Research

Ajay Gupta, MD                               Josiane LaJoie, MD
Cleveland Clinic                             New York University
Department of Neurology                      Department of Neurology
Cleveland, OH                                New York, NY
Specialty: Pediatric                         Specialty: Pediatric Neurology

Elizabeth Petri Henske, MD                   Paul Levisohn, MD
Center for LAM Research and Clinical Care    University of Colorado
Brigham & Women’s Hospital                   Department of Neurology
Boston, MA                                   Denver, CO
                                             Specialty: Pediatric Neurology
John Hulbert, MD
Urologic Physicians, P.A.
Edina, MN
Specialty: Urological Surgery

Leadership (cont.)

Mark Mausner, MD                                         William Taft, MD, PhD
Georgetown University                                    University of Virginia
Washington, DC                                           Department of Neurology
Specialty: Plastic and Reconstructive Surgery            Charlottesville, VA
                                                         Specialty: Pediatric Neurology
William McClintock, MD
Children's National Medical Center                       Elizabeth A. Thiele, MD, PhD
Department of Neurology                                  Massachusetts General Hospital
Fairfax, VA                                              Department of Neurology
Specialty: Pediatric Neurology                           Boston, MA
                                                         Specialty: Pediatric Neurology
Frank McCormack, MD
University of Cincinnati School of Medicine              William G. Ward, MD
Pulmonary Division                                       Wake Forest University School of Medicine
Cincinnati, OH                                           Baptist Medical Center
Specialty: Pulmonology                                   Department of Orthopedic Surgery
                                                         Winston Salem, NC
Greg Mlynarczyk, DDS                                     Specialty: Orthopedic Surgery
Santa Rosa, CA
Specialty: Dentistry                                     Howard Weiner, MD
                                                         New York University Medical Center
Hope Northrup, MD                                        Division of Pediatric Neurosurgery
The University of Texas Medical School at Houston        New York, NY
Department of Pediatrics, Division of Medical Genetics   Specialty: Neurosurgery
Houston, TX
Specialty: Pediatrics & Genetics                         Shelly Williams, MD
                                                         Childrens Hospital of Pittsburgh
M. Scott Perry, MD                                       Department of Neurology
Children’s Hospital                                      Pittsburgh, PA
Department of Neurology                                  Specialty: Pediatric Neurology
Ft. Worth, TX
Specialty: Pediatric Neurology                           Michael Wong, MD, PhD
                                                         Washington University
E. Steve Roach, MD                                       Department of Neurology
Ohio State University                                    St. Louis, MO
Department of Neurology                                  Specialty: Pediatric Neurology
Specialty: Pediatric Neurology
                                                         Joyce Wu, MD
Mustafa Sahin, MD, PhD                                   University of California, Los Angeles
Children’s Hospital                                      Division of Pediatric Neurology
Department of Neurology                                  Los Angeles, CA
Boston, MA                                               Specialty: Pediatric Neurology
Specialty: Pediatric Neurology
                                                         Raymond Yeung, MD
Steven P. Sparagana, MD                                  University of Washington School of Medicine
Texas Scottish Rite Hospital for Children                Division of Surgery and Medical Genetics
Department of Neurology                                  Seattle, WA
Dallas, TX                                               Specialty: Surgery
Specialty: Pediatric Neurology

       22                                                                         800.225.6872
International Scientific Advisory Board               David Kwiatkowski, MD, PhD
                                                      Department of Medicine
Elizabeth Petri Henske, MD, Chair                     Brigham & Women’s Hospital
Director, Center for LAM Research and Clinical Care   Boston, MA
Brigham & Women’s Hospital
Boston, MA                                            Brendan Manning, PhD
                                                      Department of Genetics and Complex Diseases
Peter Crino, MD, PhD                                  Harvard School of Public Health
Department of Neurology                               Boston, MA
University of Pennsylvania
Philadelphia, PA                                      Hope Northrup, MD
                                                      Department of Pediatrics, Division of Medical Genetics
Paolo Curatolo, MD                                    University of Texas Health Science Center
Pediatric Neurosciences                               Houston, TX
Tor Vergata University of Rome
Rome, Italy                                           Bernardo Sabatini, MD, PhD
                                                      Department of Neurobiology
Petrus de Vries, MD, PhD                              Harvard Medical School
Department of Psychology                              Boston, MA
Cambridge University
Cambridge, UK                                         Julian Sampson, MB
                                                      Chair, Institute of Genetics
Howard Goodkin, MD, PhD                               University of Wales College of Medicine
Department of Neurology                               Cardiff, UK
University of Virginia
Charlottesville, VA                                   Andrew Tee, PhD
                                                      Institute of Genetics
Gregory Holmes, MD                                    University of Wales College of Medicine
Department of Neurology                               Cardiff, UK
Dartmouth University
Lebanon, NH                                           Cheryl Walker, PhD
                                                      Center for Research on Environmental Disease
Frances Jensen, MD                                    The University of Texas
Department of Neurology                               M.D. Anderson Cancer Center
Children’s Hospital/Harvard                           Science Park-Research Division
Boston, MA                                            Smithville, TX

Sergiusz Jozwiak, MD, PhD
Department of Neurology
Children’s Memorial Health Institute
Warsaw, Poland

Chris Kingswood, MD
Brighton & Sussex University Hospitals Trust
Renal Unit
Brighton, UK

                                                National Tuberous Sclerosis Association, Inc.
                                                      (d.b.a. TS Alliance) and Affiliate
                                                       (TS Alliance Endowment Fund)
                              Consolidated Statements of Financial Position     •    June 30, 2010 and 2009
                                                                                    2010                            2009
    Current Assets
      Cash                                                               $        552,417                     $     731,532
      Short-term investments                                                    2,732,673                         2,600,043
      Accounts receivable                                                          15,130                            21,815
      Promises to give, current portion                                            82,900                           118,600
      Inventory                                                                    17,793                            23,841
      Prepaid expenses                                                             86,797                            47,609
         Total current assets                                                   3,487,710                         3,543,440
    Long-term investments                                                       3,882,272                         3,651,157
    Promises to give, less current portion                                         50,000                           100,000
    Property and equipment                                                        158,842                           186,415
Total Assets                                                             $      7,578,824                     $   7,481,012

Liabilities and Net Assets
     Current liabilities
         Accounts payable and accrued expenses                           $           53,655                   $     82,134
         Accrued compensation                                                        57,359                         46,768
         Deferred revenue                                                                  -                         3,900
         Gift annuity obligations, current portion                                    9,400                          9,400
         Total current liabilities                                                  120,414                        142,202
    Gift annuity obligations, less current portion                                   58,251                         63,106
         Total liabilities                                                          178,665                        205,308
Commitments and contingency                                                                -                               -
Net assets
      Undesignated                                                                566,132                           337,257
      Designated                                                                4,286,326                         4,560,054
         Total unrestricted                                                     4,852,458                         4,897,311
    Temporarily restricted                                                      1,643,257                         1,473,949
    Permanently restricted                                                        904,444                           904,444
         Total net assets                                                       7,400,159                         7,275,704
Total liabilities and net assets                                         $      7,578,824                     $   7,481,012

  The TS Alliance annually engages a certified public accounting firm to conduct an independent audit of its operations.
  The current year’s auditors completed its 2010 audit and submitted an unqualified opinion to the TS Alliance Board
  of Directors. The complete audited financial statements are on file at the TS Alliance. To obtain a copy, please call
  800.225.6872 or visit our website at The 2010 summary was prepared from the audited consolidated
  statements of the TS Alliance and the TS Alliance Endowment Fund. The relationship of the organizations requires
  consolidation per accounting principles generally accepted in the United States of America. The operating entity ended
  the year with a $8,883 surplus.

       24                                                                                        800.225.6872
                                             National Tuberous Sclerosis Association, Inc.
                                                   (d.b.a. TS Alliance) and Affiliate
                                                    (TS Alliance Endowment Fund)
                                                 Consolidated Statements of Activities

                                                                                Temporarily       P e r manently       2010            2009
                                                   U nr e s t r i c t e d       Restricted         Restricted          Total           Total

Revenue and Suppor t
  Special Events                                  $ 1,728,207               $      91,779     $              -     $ 1,819,986     $ 1,915,375
  Cost of direct benefits to donors                  (234,166)                                                        (234,166)       (272,432)
     Special events, net                            1,494,041                     91,779                     -       1,585,820       1,642,943
  Contributions                                       571,138                    596,568                             1,167,706       1,277,629
  Interest and dividends                              108,185                        695                               108,880         125,390
  Memorials and honorariums                            89,762                     14,209                               103,971         104,182
  Federated funding                                    91,347                                                           91,347          78,586
  Conferences                                          56,970                                                           56,970          41,527
  Other income                                          3,967                                                            3,967          13,852
                                                    2,415,410                    703,251                     -       3,118,661       3,284,109

   Net assets released from restrictions -
    satisfaction of program restrictions               535,104                   (535,104)                                     -                 -

      Total revenue and support                     2,950,514                    168,147                     -       3,118,661       3,284,109

Expens es
  Program services
    Research                                        1,425,738                                                        1,425,738       1,311,445
    Family services                                   384,849                                                          384,849         558,814
    Public health education                           189,302                                                          189,302         260,804
    Government relations                              152,958                                                          152,958         142,286
    Professional education                             11,778                                                           11,778          56,455
      Total Program Services                        2,164,625                            -                   -       2,164,625       2,329,804
  Supporting Services
    Fund raising                                      517,486                                                          517,486         487,227
    Management and general                            520,765                                                          520,765         651,886
      Total supporting services                     1,038,251                           -                    -       1,038,251       1,139,113
      Total expense                                 3,202,876                           -                    -       3,202,876       3,468,917
         Change in net assets before other item      (252,362)                   168,147                     -         (84,215)       (184,808)
         Net gain (loss) on investments               207,509                      1,161                               208,670        (921,472)

C h a n g es i n n e t as s e t s                       (44,853)                 169,308                     -        124,455       (1,106,280)

   Net assets, beginning of year                    4,897,311                   1,473,949           904,444          7,275,704       8,381,984

Ne t as se ts , e nd o f yea r                    $ 4,852,458               $ 1,643,257       $     904,444        $ 7,400,159     $ 7,275,704

            801 Roeder Road, Suite 750
           Silver Spring, Maryland 20910


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