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.

Join the TSC Alliance for the first conference in the 2025 TSC Regional Conference Series in Boston, MA on Saturday, May 3, 2025, at the Bentley University Conference Center. This one-day conference aimed at individuals with tuberous sclerosis complex (TSC) and their caregivers will feature leading local researchers and clinicians specializing in TSC. It will also include networking opportunities to meet other families and individuals from the area. Topics will include sessions across the lifespan of TSC, including: - Research updates, including upcoming clinical studies and trials for TSC - Managing behaviors in TSC-Associated Neuropsychiatric Disorders (TAND) and caregiver mental health - Genetics and family planning - Reproductive and perinatal health issues - Seizure types and treatments for children and adults - Kidney and skin involvement and treatment options Conference registration will be open from 8:00 to 9:30 am ET and the conference will conclude at 5:30 pm ET. Learn more about the 2025 TSC Regional Conference Series at https://lnkd.in/eVYDzBGg.

We are excited to have UCB as a National Sponsor for the 2025 Step Forward to Cure TSC! UCB's vision is to create value for patients now and in the future. They fulfill this purpose by elevating the lives of patient and their families through their medicines, creating positive change across society. UCB incorporates the individual experiences of patients and caregivers into the discovery, development, and delivery of their medicines, leveraging their insights to inform their science and develop innovative and differentiated solutions. This includes their commitment to collaborating with others in the healthcare system, inclusive approach to research and equitable access and affordability. Thank you to UCB 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

?? Get ready for a night of laughter and hope! ?? We're thrilled to invite you to the 24th Annual Comedy for a Cure, benefiting the TSC Alliance, on Sunday, April 6, 2025, at Vibiana in Los Angeles, CA! Expect a night full of side-splitting performances from Tom Papa, Ron Pearson and emceed by the hilarious Gary Cannon. ?? This incredible evening supports the TSC community and the TSC Alliance’s mission to ensure that everyone impacted by tuberous sclerosis complex (TSC) can live their fullest lives. ?? ??? Grab your tickets and sponsorships today at comedyforacure.org. Can't make it in person? Donate in support of the TSC community! #comedyforacure #C4C

Yesterday, our CEO, Megan Golden, spoke at the #RareDiseaseSummit, hosted by Access USA/Informa. This event brings together key stakeholders in the rare disease space to tackle challenges in patient access, commercialization, advocacy, and innovation. In her session, "Funding the Fight — Patient Power in Driving Rare Disease Investment," Megan highlighted how Mission Cure Capital works to bridge the ‘valley of death’ in biotech funding, helping promising pancreatitis therapies reach clinical trials. Megan was joined by Kari Luther Rosbeck (TSC Alliance) and Nasha Fitter (FOXG1 Research Foundation) as fellow panelists, with Chelsey Hathaway McCarthy (The DDX3X Foundation) moderating an insightful discussion. A huge thank you to our fellow panelists and everyone who attended! Collaboration between patient organizations, biotech, and investors is essential to driving real progress in rare disease development. #RareDisease #ImpactInvesting #PatientAdvocacy

After 21 years at the TSC Alliance, Jaye Isham will be retiring on Wednesday, April 30, 2025. Since 2004, Jaye has played a pivotal role in shaping the voice and identity of the organization, first as Director, Communications; then Vice President, Communications Strategy; Senior Vice President, Strategic Communications; and most recently Chief Outreach Officer, where he oversaw the organization’s vast outreach initiatives, including Communications, Community Programs and Government & Global Relations. During his tenure, Jaye produced 51 issues of Perspective magazine, supported the development and implementation of several strategic plans, helped stage four National/World TSC Conferences, oversaw five website redesigns and in May 2021 led the organization’s rebranding to the TSC Alliance. He also spent countless hours ensuring all public-facing resources, publications and materials adhered to the TSC Alliance’s brand and met the high standards the tuberous sclerosis complex (TSC) community deserves. Simply put, Jaye’s fingerprints are all over the TSC Alliance’s accomplishments of the last two decades. Part of why the TSC Alliance is a model nonprofit today is due to Jaye’s commitment to excellence. Moreover, Jaye’s legacy will be in how he helped shape and preserve the culture of the organization. He fostered collaboration, playing a key role in founding both the Infantile Spasms Awareness Network in 2015 and the Seizure Action Plan Coalition in late 2020, both of which serve as examples for how rare disease nonprofit organizations can successfully partner together to impact awareness and educational efforts. Jaye was a mentor to junior staff and advocated on their behalf to leadership. He unwaveringly offered support to anyone who needed it, often working after hours and on weekends to ensure deadlines were met. As part of the Executive team, Jaye centered the TSC community and their needs in everything the organization did. Jaye also connected with and supported hundreds of individuals and families affected by TSC online and in person over the years. Jaye brought his whole heart to work every day and made the mission of the TSC Alliance his life’s work. While we will miss Jaye around the office, we know he is still a member of the TSC family. Please join us in congratulating Jaye on his well-deserved retirement.

I am looking forward to attending this conference to provide support to individuals living with TSC and their families, and to learn from them!

Team Myles Militia, named in honor of the late Frank Cenna, is proudly returning for its 15th year to commemorate Frank’s legacy and offer hope to future generations affected by tuberous sclerosis complex (TSC). The incredible support of the Maryland TSC community has been instrumental in their journey, and Myles Militia is deeply grateful for the dedication and passion shown by everyone involved. Their mission, to ensure that every individual with TSC has the opportunity to live life to the fullest. Join Myles Militia in stepping forward for a brighter future. Visit stepforwardtocuretsc.org to learn more. #step4tsc #stepforwardtocuretsc

Join the TSC Alliance for the first conference in the 2025 TSC Regional Conference Series in Boston, MA on Saturday, May 3, 2025, at the Bentley University Conference Center. This one-day conference aimed at individuals with tuberous sclerosis complex (TSC) and their caregivers will feature leading local researchers and clinicians specializing in TSC. It will also include networking opportunities to meet other families and individuals from the area. Topics will include sessions across the lifespan of TSC, including: - Research updates, including upcoming clinical studies and trials for TSC - Managing behaviors in TSC-Associated Neuropsychiatric Disorders (TAND) and caregiver mental health - Genetics and family planning - Reproductive and perinatal health issues - Seizure types and treatments for children and adults - Kidney and skin involvement and treatment options Conference registration will be open from 8:00 to 9:30 am ET and the conference will conclude at 5:30 pm ET. Learn more about the 2025 TSC Regional Conference Series at https://lnkd.in/eVYDzBGg.

Join us for the 24th Annual Comedy for a Cure benefiting the TSC Alliance on Sunday, April 6, 2025, at Vibiana in Los Angeles, CA! During the event we will be honoring the Huddleston Family with the Courage in Leadership Award for their fearless mission to raise awareness of TSC and funds to drive research through hosting events at their Irwindale Speedway, engaging the NASCAR and celebrity community and providing peer support to others living with TSC. Their support of our cause is inspired by their daughter, Hailey. Come support the TSC community and the TSC Alliance's mission to create a future where everyone affected by tuberous sclerosis complex (TSC) can live their fullest lives.?? ??? Purchase your tickets and sponsorships at comedyforacure.org. #cfac #comedyforacure #tscalliance