About this community
The Tuberous Sclerosis Support Community connects everyone affected by tuberous sclerosis complex for support and inspiration. This community is sponsored by the TSC Alliance, an Inspire trusted partner.
Contact
801 Roeder Road
Suite 750
Silver Spring, MD 20910
Phone: (301) 562-9890
Fax: (301) 562-9870
info@tscalliance.org
www.tscalliance.org
Community Leaders
Hello! My name is Steph Shuff, and I am a writer working here at Inspire. Every month, I help to write, edit, and publish our Monthly Dose newsletter, a monthly email that highlights articles from ac ... Show more
Hi all! I have a beautiful 6 month baby girl. She is meeting her milestones right on time. I am worried about TSC. I do have PPA, but feel concerned that she may have TSC however, no one, including ... Show more
My child has growing AMLs in the kidneys. I was reading about cryoablation and radiofrequency ablation to stop or delay the AMLs from growing. Does anyone know of a USA provider who does this? Or has ... Show more
As early as today, our Dear Colleague champions, Reps. Raskin and Fitzpatrick, will offer an amendment on the House floor to the FY24 Defense Appropriations Act to increase funding for the Tuberous S ... Show more
Dear Members, Many of us have been involved in clinical trials, or have considered enrolling in one, or have supported someone who has. At Inspire, we believe that all of us, as patients and caregiv ... Show more
I have a son with TS that has had a lot of rage issues where he attacks us. I is going on Risperidal which helped a lot. But lately he has gotten rages again and several times a day he is attacking u ... Show more
My daughter is 5 almost 6 and I've noticed these spots for a while. It's summer time so as her skin has tanned they've just been in the forefront of my mind more. She had probably at least 5 randomly ... Show more
With healthcare costs on the rise in the United States, many of us are finding treatment to be more expensive. Sometimes insurance coverage, when available, has changed. Have you encountered higher p ... Show more
After my daughter became aware of all the information about her illness, she found out about her illness via the Internet..and this made her sad, as she sometimes cries out of fear that something mig ... Show more
Hi im new to this and my daughter name is Ba'Leigh and she was diagnosed with TSC i found out right after i gave birth april 14,2022 and she stayed in NICU for 2wks and she came home and been seeing ... Show more