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
06/18/2026
Check out the recording from Genetics Made Simple!
The fourth pre-conference webinar, Genetics Made Simple, featuring moderator Danielle Nolan, MD and presenter Hope Northrup, MD, breaks down the basics of TSC genetics making it easier to understand how TSC happens, why it varies from person to person, and what this means for families and individuals.
Watch the recording here: https://hubs.li/Q04lWx820
Learn more about the 2026 TSC World Conference Webinar Series here: https://hubs.li/Q04lW-960
Genetics Made Simple The fourth pre-conference webinar, Genetics Made Simple, featuring ...
06/18/2026
Today, the TSC Alliance celebrates an incredible milestone—Kari Luther Rosbeck’s 25th anniversary with the TSC Alliance.
For two and one-half decades, Kari has dedicated her life’s work to building a future where everyone affected by tuberous sclerosis complex (TSC) has what they need to live their fullest lives. She joined the organization in 2001 and has served as President & CEO since 2007. Her leadership has shaped not only where we are today, but what is possible for generations to come.
Read more about Kari's 25 years of impact: https://hubs.li/Q04lQWBy0
🔥 MONSTROUS MILESTONES UNLOCKED! 💪🏃♂️
Huge shoutout to Kyle of Team TSC: Endurance for absolutely crushing some incredible feats last month!
✅ Conquered the Heartland 25K
✅ Powered through a 5K
✅ Did it all while pushing Adaline — talk about strength, heart, and determination!
This wasn’t just a race… it was a testament to grit, resilience, and what it means to show up and give everything you’ve got 💥
And he’s not done yet…
📣 Cheer Kyle on later this month as he takes on his next massive challenge:
👉 a 24-hour continuous movement event
👉 no sitting down — pure endurance, nonstop grind!
Let’s rally behind him and show what Team TSC is all about 🙌
Want to join Team TSC and participate in a local event all while helping to raise money for the TSC Alliance? Reach out to [email protected] for more information.
Lauren and Sean Shillinger were in a state of shock and despair when their daughter, Brynleigh, was diagnosed with tuberous sclerosis complex (TSC) as an infant 12 years ago. The family has risen to the challenge. Along with seizures and other physical symptoms, Brynleigh struggles with TSC-Associated Neuropsychiatric Disorders (TAND). Still, Lauren and Sean are optimistic that advances in TSC research can improve Brynleigh’s life. They attribute that optimism to the TSC Alliance.
The Shillingers firmly believe that with more innovative research, earlier diagnosis and better treatments are closer than ever. Please don't wait.
Donate today: https://hubs.li/Q04lHMYH0
06/17/2026
Join us tonight at 8 pm ET for the fourth pre-conference webinar, Genetics Made Simple, featuring moderator Danielle Nolan, MD and presenter Hope Northrup, MD. This webinar will break down the basics of TSC genetics making it easier to understand how TSC happens, why it varies from person to person, and what this means for families and individuals.
Register here: https://hubs.li/Q04lBxjl0
06/16/2026
💙 Volunteer Spotlight: Michael Wood 💙
Today we’re honored to spotlight Michael Wood from Region 12: Mid-Atlantic, a dedicated leader who brings both heart and professional expertise to the TSC community.
As a Community Support Lead, Michael has made an incredible impact by using his background as a therapist to support others in meaningful ways. Through his Caregiver Support Calls, he creates a safe and welcoming space for caregivers to connect, learn, and grow.
These open calls provide practical strategies and tools for caregiver wellbeing, while reminding families that they are not alone in this journey. And his support doesn’t stop there—keep an eye out for the next series of caregiver calls coming this summer! ☀️
Michael’s motivation comes from his own family’s experience:
💬 “When our son was diagnosed with TSC, we found it to be incredibly helpful to connect with and hear from others. I hope to offer this same support to others going through similar experiences.”
💬 “It is important to me to find a way to get involved and let families know that they are not alone in managing TSC.”
Michael, thank you for showing up with compassion, for sharing your expertise, and for creating spaces where caregivers feel supported, seen, and empowered. 💙
👏 Help us thank Michael by dropping a 💙 in the comments!
Managing Tuberous Sclerosis Complex (TSC) is an ongoing journey that often requires lifelong monitoring, evolving treatment plans, and coordination across multiple specialists and care providers.
Because TSC can affect multiple organ systems over time, patients and caregivers often coordinate care across many providers, support teams, and insurance requirements, making continuity of care essential.
Specialty pharmacies, like Total Care RX, can play an important role in ongoing care management by helping patients and providers navigate treatment changes, coordinate medication access, support adherence, monitor ongoing therapy needs, and help reduce interruptions in care throughout the treatment journey.
As individuals with TSC transition through childhood, adolescence, and adulthood, coordinated support can help patients and caregivers feel more connected, informed, and prepared for the next step in care.
To help healthcare teams better understand the challenges patients may face across the continuum of care, Total Care RX developed a practical resource focused on access, coordination, and supporting patients from diagnosis through ongoing treatment management.
🔗 Download the guide → https://hubs.li/Q04lykzx0
06/15/2026
Join us this Wednesday, June 17, 2026, at 8 pm ET for the fourth pre-conference webinar, Genetics Made Simple, featuring moderator Danielle Nolan, MD and presenter Hope Northrup, MD. This webinar will break down the basics of TSC genetics making it easier to understand how TSC happens, why it varies from person to person, and what this means for families and individuals.
Register here: https://hubs.li/Q04ln7wC0
recap!
Travel through the walk season with us!
Thank you to all of our volunteers, walk hosts, participants, sponsors and staff that made this season possible!
Step forward with us at www.stepforwardtocuretsc.org
Click here to claim your Sponsored Listing.
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Address
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 |