Featured Charity: Tuberous Sclerosis Alliance

When it comes to finding a cure for Tuberous Sclerosis Complex (TSC), the leading known cause of epilepsy and autism, Tuberous Sclerosis Alliance says “We’ll give everything but up.”

The mission of the Tuberous Sclerosis Alliance (TS Alliance) is to find a cure for tuberous sclerosis complex (TSC), while improving the lives of TSC. TSC is a rare genetic disease that causes tumors to grow on vital body organs including the brain, heart, lungs, kidney and skin. It is the leading known genetic cause of epilepsy and autism.

In order to achieve our mission, the TS Alliance accelerates drug discovery by funding basic, translational and clinical research through our grants program, while also working closely with the National Institutes of Health and the Department of Defense’s Congressionally Directed Medical Research Program.  The TS Alliance also recognizes and collaborates with 35 TSC clinics around the country that provide comprehensive support and treatment for the many manifestations of TSC.

The TS Alliance also serves as the primary national advocacy organization for those living with TSC. Through our government relations program the organization continues to work with the federal government to ensure future funding for TSC research.  The organization also strives to spread awareness of the disease globally by working with related advocacy groups, healthcare professionals, pharmaceutical companies, consumers, educators, media, policymakers and regulators.  In 2012, the TS Alliance held a Consensus Conference, which brought together clinicians and researchers from around the world to update the diagnostic and treatment criteria for TSC. One of our main focuses moving forward is making sure that all clinicians are aware of these gold standards and that everyone living with TSC receives the highest quality of care.

Additionally, the TS Alliance provides comfort for families and individuals with TSC through a series of support networks. The first resource is the Director of Advocacy & Education, who provides direct support for newly diagnosed families and those with immediate questions. Secondly, the organization sponsors 32 volunteer-driven Community Alliances who work closely with the TS Alliance to facilitate local connections for individuals and families affected by TSC and increase awareness. Thirdly, the TS Alliance organizes peer-to-peer support through our TSC Connect Program. Finally, individuals and families can also turn to each other for advice and support online utilizing our Facebook and Inspire groups.

Ways to help Tuberous Sclerosis Alliance

The first thing an individual or organization can do to help is make a donation to the TS Alliance, and specifically toward TSC research.  If your company offers an employee workplace giving program, you can specify a specific amount of money to be taken out of your paycheck and designate it to Tuberous Sclerosis Alliance.  If you work for the government, participate in the Combined Federal Campaign this Fall and designate your pledge to us using our CFC# 11715.   In 2012, the TS Alliance launched the Unlock the Cure campaign to fund the next wave of scientific breakthroughs, a vital step toward implementing research needed to move potential treatments from the lab (pre-clinical) to the TSC community (trials). These discoveries truly make a difference in the lives of individuals and families as they experience their own triumphs and challenges with TSC. Click here to learn more about Unlock the Cure.

The second way an individual or an organization can get involved is by participating in one of our many local awareness events, including our Step Forward to Cure TSC Walkathon. Every year volunteers coordinate 35 community walks across the country to help raise awareness of the disease.

Click here to learn more about the walk program and to find a walk near you. 

Finally, the most impactful thing someone can do is share information about TSC with their friends and families and encourage anyone struggling with TSC to reach out to the TS Alliance for support. One of the greatest challenges still facing our organization is the missed or misdiagnosis of the disease that, if gone untreated, can have catastrophic long-term effects on both children and adults. Only through increased awareness of both the disease and the available treatment options can we ensure that everyone receives the care they need and deserve. 

Connect with Tuberous Sclerosis Alliance!

Web Site:
 www.facebook.com/tsalliance
@tsalliance

www.linkedin.com/company/tuberous-sclerosis-alliance
www.youtube.com/user/tsalliance?feature=watch
www.inspire.com/groups/tuberous-sclerosis-alliance