About the TS Alliance |
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The Tuberous Sclerosis Alliance (TS Alliance) – the only national voluntary health organization for the genetic disorder known as tuberous sclerosis complex (TSC) – is a membership-based organization; members have voting privileges at the organization's annual meeting. It is also the lead organization for the funding of medical research related to TSC. Such medical research has included the breakthrough discovery of two genes (TSC1 and TSC2) that are known to cause the disorder. The TS Alliance was established in 1974 as the National Tuberous Sclerosis Association (NTSA), which it remained titled until 2000. Four mothers of children with TSC founded the organization to provide fellowship, generate awareness, pursue more knowledge and provide hope to those who share the common bond of facing the daily challenges of TSC. During its more than 30 years of existence and growth, the TS Alliance has expanded its mission to improve the quality of life for individuals and families affected by tuberous sclerosis complex through the stimulation and sponsorship of research, the development of programs, support services and resource information, and the development and implementation of public and professional education programs designed to heighten awareness of TSC. |
Shapses Family Honored by the TS Alliance!Honorary Chair Tiki Barber and host Julianne Moore joined the TS Alliance in honoring Marc and Marla Shapses with fellow honorees Francine Ostrow, Liz Buchsbaum and Dr. Howard Weiner at Giant Steps to the Cure. The fun, casual, sports-themed event, emceed by Natalie Morales of NBC's Today on April 12th at Chelsea Piers, was another special evening in support of the cause. Guests walked the red carpet and mingled with celebrities like Darryl Strawberry, Dan Grimaldi of the Sopranos and Robert Verdi of television's Fashion Police. Moving speeches and a beautiful photo montage reminded guests what the event was about: finding a cure for TS and improving the lives of those affected. See Photos of the event.
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1999-2006: TS Alliance Then and Now |
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When the Emmory Reagan Shapses Classic began in 1999, the TS Alliance was a very different organization. The following are some striking differences: |
| 1999 | 2006 | |
| Number of Staff | 12 | 12 |
| Combined Fund Balance (Alliance and Endowment) | $567,000 | $6,701,013 |
| Website Activity | First Site Launched | 1.2 million hits monthly |
| Number of Community Alliances | 0 | 25 |
| Number of TSC Clinics Nationwide | 7 | 19 |
| NIH Funding | $3 million | $10 million |
| Department of Defense Funding | $0 | $4.3 million |
| Number of Volunteers | 90 | 2,000 |
| Cumulative Amount of Research Funded by TS Alliance | $3.5 million | $11.9 million |
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For more information about the Tuberous Sclerosis Alliance, please visit their website at www.tsalliance.org. | |
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