TS Alliance of Northern California Walking to Find a Cure for Tuberous Sclerosis Complex

From TS Alliance:

On Saturday, October 29, local volunteers and supporters will be gathering to join a community walkathon called the LIDS Step Forward to Cure Tuberous Sclerosis Complex. The event takes place at the Dominican Sisters of Mission San Jose Olive Grove & Auditorium in Fremont, rain or shine, with registration beginning at 9:00 A.M. and the walk at 10:00 A.M. All proceeds benefit the Tuberous Sclerosis Alliance (TS Alliance).

LIDS Step Forward to Cure Tuberous SclerosisComplex was created to raise awareness of tuberous sclerosis complex (TSC), a rare and devastating genetic disorder, while generating the funds critical to identifying effective treatments and an eventual cure.

“My three-year-old daughter Molly’s diagnosis with TSC was a total shock,” says volunteer Walk Co-Chair Bridget Britt, of Fremont. “Bringing together families struggling with this complicated and overwhelming disorder is key to learning from and supporting one another through the challenges TSC brings to individuals and families.”

Walkers can register to participate on walk-day. There is no registration fee, but pledges are required to participate. Prizes will be awarded to the top three individual fund raisers. Walkers raising at least $100 will receive a Step Forward t-shirt.

TSC is estimated to affect nearly 50,000 people in the U.S. and more than one million worldwide. Although it can be transmitted through genetic inheritance, about two-thirds of TSC cases are believed to be a spontaneous mutation. TSC is a multi-system disorder, due to the growth of tumors in vital organs, such as the brain, heart, kidney, lungs and skin. People with TSC commonly have epilepsy, behavioral disorders (such as attention deficit disorder-ADD), developmental delay, skin disorders (such as lesions) and other symptoms. TSC is also the leading genetic cause of both autism and epilepsy. Treatments have improved in recent years thanks to new research, but there still is no cure for the condition.

State Senator Bob Wieckowski (D-Fremont) issued a statement praising the volunteers’ efforts, saying, "Thank you to the many individuals, families, and sponsors who are generously giving of their time and effort to Step Forward to Cure TSC. I am inspired by your advocacy and dedication to this important cause."

“The funds raised by these walks are truly changing lives,” says Jennifer Yeamans, a resident of Livermore and co-chair of the TS Alliance of Northern California. “My daughter is living proof of that.” Allison Yeamans, now 3,suffered devastating effects of uncontrolled seizures in her first year of life which markedly delayed her development.

“Just a few years ago, her prognosis in infancy would have been quite unfavorable,” continued Ms. Yeamans.“Because of recent research efforts, we were able to end the spasms, and today she walks and talks and tries to boss everyone around much like a three-year-old should. It’s truly remarkable.”
This year’s walk will feature a super-hero theme, with participants encouraged to dress up as their favorite real or imaginary super-heroes. Other family-friendly events will be on offer to provide entertainment following the walk.

For more than 40 years, the TS Alliance has been the leading source of information and resources to help individuals and families optimize care for those affected by tuberous sclerosis complex. Anyone seeking further information about the TS Alliance or TSC can go online at www.tsalliance.org or contact the organization toll-free at (800) 225-6872; or by e-mail at info@tsalliance.org.

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