TSC Alliance
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1620 Elton Road #204
The TSC Alliance® is a source of hope and support for people with tuberous sclerosis complex. TSC is a complicated disease. Too often, TSC goes undiagnosed.
Tuberous sclerosis complex (TSC) is a rare genetic disease that affects people at all stages of life. Every individual’s experience with TSC is different—many live independently while others require complex care. The TSC Alliance is working toward a future where every person and family affected by TSC has what they need to live their fullest lives. TSC causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin, and lungs. Changes in the brain caused by TSC have the biggest impact on quality of life, from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism. Some people live with few symptoms while others need continual support. Most people with TSC live normal lifespans. But we know at least two babies born each day in the United States will have it. Nearly one million people worldwide are estimated to be living with TSC, with approximately 50,000 in the United States. The TSC Alliance connects them. TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder. When TSC presents itself in the brain, it can seriously affect quality of life. TSC-associated neurological disorders (TAND) include a wide range of cognitive, behavioral and psychiatric challenges linked to the disease’s impact on brain function. Autism spectrum disorder (ASD), intellectual disabilities, neuropsychological deficits, aggressive behaviors and more can impact people with TSC and their families. The more we understand about TSC, the more we understand about other diseases. TSC is a linchpin disease, meaning its genetic pathway also plays a role in other diseases and disorders. Advancements in TSC research have enhanced treatments for autism, epilepsy, and cancer—diseases that affect nearly 27 million people in the US alone. For example, autism in TSC mimics autism generally in terms of how it affects the brain. This means research around TSC and autism will lead to breakthroughs for autism more broadly as well. Everyone should know about TSC, especially healthcare professionals. Too many people go undiagnosed or misdiagnosed for years because of a lack of awareness, even though TSC is as prevalent as ALS, cystic fibrosis and Huntington’s disease. Early diagnoses change lives because they enable early interventions, which may prevent symptoms like developmental delays. More research improves more lives. In the last decade, the TSC Alliance has helped coordinate and fund research that resulted in two new FDA-approved drugs for TSC manifestations: to shrink tumors in the brain and kidneys and to treat seizures associated with TSC. Working together to create progress like this will lead to even more breakthroughs and enable more people with TSC to thrive on their own terms.
09/24/2026
A “Little” Big Brother, a Love of Music and a Night for TSC
Ethan Sanchez, 22, was diagnosed with tuberous sclerosis complex (TSC) at just 6 weeks old. From an early age, his big brother Tyler helped care for him, and when Ethan’s two younger brothers, Dylan and Elijah, were born, they too became part of his support system, helping Mom and Dad wherever they could.
Elijah, Ethan’s youngest brother, is often asked if the two are twins. His answer is always the same: “No, he’s six years older than me, but he’s still my ‘little’ big brother.”
That special bond inspired Elijah to turn his love of music and community into action.
During his junior year of high school, Elijah founded Live Frequency, a series of charitable concerts created to bring people together through live music while raising money for causes that matter. Since its founding, Live Frequency has raised thousands of dollars for local causes while also supporting emerging musicians by giving them a stage and an audience.
On October 16, Elijah will dedicate the next Live Frequency concert to his “little” big brother and to the genetic disease that has shaped so much of their family’s life. All proceeds from the event will benefit the TSC Alliance, and the concert will also offer the community an opportunity to learn more about TSC.
For Elijah, this concert is more than another Live Frequency event. It’s a way to stand beside his brother, honor the bond they share and turn something he loves—music—into something that can make a difference for Ethan and for other families affected by TSC.
At the heart of it all is the relationship between two brothers—and one younger brother’s desire to use his talents to show his “little” big brother just how much he means to him.
Live in the Claremont, CA area? Learn more about the Live Frequency event here: https://hubs.li/Q04ygjbW0
09/24/2026
Planning for the future of a loved one with special needs can feel overwhelming, but you don't have to navigate it alone.
Join the 3rd Annual Special Needs Planning Conference hosted by All Needs Planning on September 25. This free virtual event will cover common planning pitfalls and practical strategies to help families build a stronger future.
We're especially excited that Mary McDirmid, ChSNC, ChFC, who presented during the session Federal Assistance Programs and Special Needs Trusts at the 2026 TSC World Conference, will be featured as a speaker. As both a special needs planning expert and parent of a child with a rare disease, Mary brings valuable professional and personal insight to this important topic.
📅 September 25
🕘 9:00 a.m.–12:30 p.m. PT | 12:00–3:30 p.m. ET
💻 Free Virtual Event
Reserve your spot today:
https://hubs.li/Q04ydDCV0
09/23/2026
TSC in the news!
For generations, many Nebraskans with intellectual disabilities were sent to what was once known�as the Beatrice State Home for the Mentally Re****ed. But Nancy Enstrom vowed never to send a child there.
Given the severity of her disability, Anna Enstrom, now 51, always qualified for Nebraska’s highest Medicaid funding tier, which paid for one-on-one care at a day program near their home.
Then came interRAI.
Read more how the Nebraska system works: nbcnews.to/4itSTPj
09/22/2026
Don't see your disorder listed on REN? We have a home for you too. REN connects families to families, families to physicians, and founders to founders. If you're building or leading a patient organization for a disorder that includes seizures, REN membership connects you with peer leaders who've walked this road before, leadership and capacity-building bootcamps, public awareness support, and a network built specifically to help organizations - any size, age, or experience - succeed.
👉 https://www.rareepilepsynetwork.org/members-partners
Rare Epilepsy Network: REN
09/22/2026
Most rare epilepsy resources focus on childhood — but the questions don't stop at 18. Are you an adult with seizures? Care for an adult who has seizures? 📢 Just days away! Join Rare Epilepsies & Adults: Breaking Barriers — Thursday, September 25th, 1:00 PM ET presented by REN and Genetic Epilepsy in Adult Network (GEAN).
On the agenda:
✅ Adult genetic testing
✅ Transition to adult care
✅ Ongoing management
✅ Clinical trials
✅ and more
Registration required — save your seat: bit.ly/RareEpilepsiesAdults
Rare Epilepsy Network: REN
09/22/2026
Planning for the future of a loved one with special needs can feel overwhelming, but you don't have to navigate it alone.
Join the 3rd Annual Special Needs Planning Conference hosted by All Needs Planning on September 25. This free virtual event will cover common planning pitfalls and practical strategies to help families build a stronger future.
We're especially excited that Mary McDirmid, ChSNC, ChFC, who presented during the session Federal Assistance Programs and Special Needs Trusts at the 2026 TSC World Conference, will be featured as a speaker. As both a special needs planning expert and parent of a child with a rare disease, Mary brings valuable professional and personal insight to this important topic.
📅 September 25
🕘 9:00 a.m.–12:30 p.m. PT | 12:00–3:30 p.m. ET
💻 Free Virtual Event
Reserve your spot today:
https://hubs.li/Q04tSh8T0
09/21/2026
Join us on Monday, October 12, 2026, at 8 pm ET for an informative Ask an Advocate session with higher education expert, Theresa Orosz, EdD.
In this session, Dr. Theresa Orosz will explore the transition from K-12 education to college, highlighting key differences in expectations, student responsibilities, and the changing role of parents.
Register here: https://hubs.li/Q04vh4yg0
09/18/2026
Join the American Academy of Developmental Medicine & Dentistry (AADMD) and Project ECHO: Epilepsy and Intellectual Developmental Disabilities for Insight into Tuberous Sclerosis Complex, a community engagement event taking place this Saturday, September 19, 2026, from 11 am to 3 pm ET at the SMC Campus Center, University of Maryland - Baltimore Campus.
This event will feature a community engagement session alongside an ECHO Hub integration, with expert insights from:
- Dr. Danielle Gordon, MD – Pediatric Neurologist, Kennedy Krieger Institute
- Dr. Jodi Lindsey, MD – Neurodevelopmental Neurologist, Kennedy Krieger Institute
- Dr. Pete Crino, MD, PhD – Neurologist, Epileptologist, Physician Scientist, University of Maryland School of Medicine
- Dr. Kurt Lehner – Pediatric Neurosurgeon, Johns Hopkins Children's Center
- Dr. Anthony R. Gioia – Pediatric Neuropsychologist, Kennedy Krieger Institute
Register to join in person or virtually: https://hubs.li/Q04xRp__0
More amazing coverage of the film The Last Sunrise and how Anna Todd is using her story and experience to raise awareness of TSC!
https://hubs.li/Q04xRBX40
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8737 Colesville Road, Suite 400
Silver Spring, MD
20910
Opening Hours
| Monday | 8:30am - 5pm |
| Tuesday | 8:30am - 5pm |
| Wednesday | 8:30am - 5pm |
| Thursday | 8:30am - 5pm |
| Friday | 8:30am - 5pm |