TSC Alliance

Urgent Government Action Needed! The TSC Alliance is urgently reaching out to the TSC community to ask you to contact your Representatives and Senators to protect funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense. This is the largest source of federally funded research specifically for TSC. We’ve provided language below to use when contacting your Representative and Senator to request them to vote NO on a continuing resolution that does not protect Congressionally Directed Medical Research Program (CDMRP) funding. Find contact information for your Representative and Senator here: Senate - https://lnkd.in/eaUVmta House - https://lnkd.in/grup5-2 If you have any questions, please contact Katie Smith at [email protected]. Dear Representative/Senator: As you work on upcoming legislation to fund federal programs through the remainder of fiscal year 2025, I encourage you to support the inclusion of language that specifically protects funding for the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD), including the Tuberous Sclerosis Complex Research Program (TSCRP). Tuberous sclerosis complex (TSC) is a genetic disorder that can cause tumor growth in all the body’s vital organs. Symptoms can include seizures, kidney failure, brain and lung tumors, autism spectrum disorder, and severe learning disabilities. TSC occurs in approximately 1:6,000 live births, affecting an estimated 50,000 Americans. Since fiscal year 2002, Congress has appropriated an aggregate of $121 million for the TSCRP. The TSCRP is a peer-reviewed program that awards grants competitively to cutting-edge research proposals aimed at gaining a better understanding of this complex disorder. It has strong bipartisan support from Members of the House and the Senate and is the only source of federally funded research specific to TSC. Continued funding is essential to support a robust level of grant awards for basic, translational and clinical research to truly provide hope for improved quality of life for all those living with TSC. We understand that, if Congress enacts a long-term continuing resolution without such protective language, the DoD intends to shift all $1.5 billion allocated for CDMRP over to the Defense Health Agency’s Operations & Maintenance account. This would result in $0 for medical research grants in FY25 for the TSCRP and other CDMRPs. Language protecting CDMRP has been provided to both House and Senate Appropriations Subcommittees on Defense. If this or similar language is not included in any long-term continuing resolution, we urge you to vote NO on this legislation. Instead, Congress should engage in negotiations to produce a final FY25 Defense Appropriations Act that fully funds the CDMRP.

TSC Alliance? to Host 24th Annual Comedy for a Cure? on April 6 in Los Angeles! Learn more: https://ow.ly/zn1m50VfALU

??♂?? Team TSC runner spotlight! ???♀? Meet Shelly – a fierce TSC warrior running for Team TSC in the United Airlines NYC Half Marathon on Sunday, March 16th! Shelly is taking on this challenge for her incredible kids, Ashlyn and Mason, and she’s no stranger to pushing her limits—she ran the NYC Marathon with Team TSC in November 2023! But this time? She says the training feels even tougher. ?? “Running is my therapy! If you would have asked the younger me about running, I would have laughed and said only if I was being chased!” Let’s cheer on Shelly as she hits the ground running for a cause close to her heart! ?? Want to support Shelly and Team TSC? Donate here: https://ow.ly/mr7z50Vf9K5 #teamtsc #2025nychalfmarathon

Meet Team Movin' for Mamacita! Named in honor of Olivia, who will be turning two in June and is lovingly called "Mamacita" by her family, this team represents a powerful journey of hope and strength. Olivia has been seizure-free since December, and each day feels like a joyous celebration for her family. Olivia’s story is one of resilience, and Team Movin' for Mamacita is dedicated to a world where no one has to live in fear of tuberous sclerosis complex (TSC). They believe in a future where TSC individuals can thrive, be confident in their own skin and face no barriers. Step forward with Team Movin' for Mamacita and register today at stepforwardtocuretsc.org! #Step4TSC

Please consider contacting your Representatives and Senators. This program funds transformative research that has broad applications across Neurodevelopmental and Neurdegenerative diseases. Scientists and Patients/Caregivers work together to move basic science into the clinic. Please support CDMRP.

Thank you Living Proof Advocacy for taking part in the TSC Alliance #tscsummit2025! #march4tscresearch

We urgently ask the TSC community to contact your Representatives and Senators TODAY to protect funding for the Tuberous Sclerosis Complex Research Program (TSCRP). See language below to use when contacting your Representatives and Senators. Learn more: https://ow.ly/Y1V350VeMLA Dear Representative/Senator: Oppose 57% Cut to Congressionally Directed Medical Research Programs and Vote NO on the FY25 Continuing Resolution! As early as this Tuesday, the House will be voting on a continuing resolution to fund government programs through the end of fiscal year 2025 (FY25). Unfortunately, the legislation cuts FY25 funding for the Department of Defense’s (DoD) Congressionally Directed Medical Research Program (CDMRP) from $1.509 billion to $650 million – a 57 percent cut from the FY24 enacted level. This includes funding for the Tuberous Sclerosis Complex Research Program (TSCRP). TSC is a genetic disorder that can cause tumor growth in all the body’s vital organs. Symptoms can include seizures, kidney failure, brain and lung tumors, autism spectrum disorder, and severe learning disabilities. TSC occurs in approximately 1:6,000 live births, affecting an estimated 50,000 Americans. Since fiscal year 2002, Congress has appropriated an aggregate of $121 million for the TSCRP. It is a peer-reviewed program that awards grants competitively to cutting-edge research proposals aimed at gaining a better understanding of this complex disorder. It has strong bipartisan support and is the only source of federally funded research specific to TSC. Continued funding is essential to supporting grant awards for basic, translational and clinical research to truly provide hope for improved quality of life for all those living with TSC. This is not a “clean” continuing resolution. Cuts would significantly disrupt research into new therapeutics for diseases and disorders that impact the men and women in the Armed Services, as well as veterans, military families and the general public. A vote for this legislation is a vote to cut federally funded medical research. Please vote NO and instead approve a full-year FY25 Defense Appropriations Act that fully funds CDMRP.

Scholarship opportunity! UCB will award 30 scholarships of up to $5,000 and 3 scholarships of up to $10,000 to people living with epilepsy, their family members and caregivers pursuing higher education. Applications for the 2025 program are due on Saturday, March 15, 2025. Learn more about the scholarship program here: https://ow.ly/Z6iC50V8rUO

We are excited to have LivaNova as a National Sponsor for the 2025 Step Forward to Cure TSC! LivaNova is a global medtech company who unites to provide hope for patients and their families through innovative medical technologies, delivering life-changing improvements for both the head and heart. LivaNova has over 25 years of experience with VNS Therapy and over 50 years of proven cardiopulmonary innovation. Thank you to LivaNova for stepping forward with the TSC Alliance to create a better future for everyone affected by tuberous sclerosis complex (TSC)! Learn more about Step Forward to Cure TSC at stepforwardtocuretsc.org. #sponsorsunday #step4tsc

Introducing Team Savannah Strong! Savannah Strong has participated in Step Forward to Cure TSC for the past five years. Named after Savannah, who has undergone four brain surgeries in her short life, but each surgery has brought her so much growth. "Savannah has taught us all about what being strong is. She faces every challenge, every surgery, every appointment with so much strength and resilience. Savannah has a love for life that is not affected by her trials with TSC." Team Savannah Strong hopes that all individuals with TSC can find strength and resilience through the challenges and celebrate all the wins big and small. Step Forward with Team Savannah Strong at stepforwardtocuretsc.org. #step4tsc #stepforwardtocuretsc