TSC Matters is a bimonthly e-newsletter featuring news from the TS Alliance, TSC research updates, upcoming TS Alliance events and more! Subscribe to stay up-to-date on everything happening at the TS Alliance.
December TSC Now Episode
In the December episode of TSC Now, a podcast by the TSC Alliance, Kelly Knupp, MD of the University of Colorado describes what infantile spasms (IS) are, why they are a medical emergency, and what parents should do if they suspect their child is having spasms. Ashley Callahan shares her story about her daughter’s IS diagnosis, what triggered her to seek help during the pandemic, and what other parents should do if they suspect something is wrong with their baby. Listen to the latest episode. You can subscribe to TSC Now on Spotify, TuneIn, Stitcher, Apple Podcasts, Google Podcasts or wherever you listen to podcasts. Listen and...Read More
December Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the service of selfless individuals across the country who give of their time, talent, and resources to help us achieve our mission to find a cure for TSC and improve the lives of those affected. Without them, we would not be where we are today.Read More
Volunteer Spotlight: Carly Kaye, Community Alliance Chair for Michigan
In addition to her role as Community Alliance Chair for Michigan, Carly Kaye is a leader and innovator in the greater TSC community. Inspired by her son, Logan, Carly is determined to make a difference. After running her own business, she was inspired to start creating apparel and merchandise that would raise awareness for TSC. In 2018, the TSC Swag Store was born and made its debut at the World TSC Conference in Dallas, Texas. Today, Carly works with local engravers and embroiders to create unique and inspiring items and donates 30 percent of all proceeds to the TSC Alliance. Carly...Read More
Ongoing Genetic Study
See below for the ongoing study.Read More
Ongoing Early Intervention and Autism Trials
See below for ongoing trials.Read More
Ongoing Biosample Studies
See below for ongoing studies.Read More
Save the Date for the 2021 Virtual March on Capitol Hill
If you are interested in participating in the Virtual March on Capitol Hill, please contact grc@tscalliance.org.Read More
Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program
NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program provides patients diagnosed with tuberous sclerosis complex (or under consideration for diagnosis) with financial assistance for travel and lodging related to participation in a clinical trial and or furtherance of treatment. Learn MoreRead More
Currently Recruiting Sibling Participants
Do you have a brother or sister with autism? Share your voice. Spread more awareness about the sibling perspective. Connect with other siblings. Educate parents, healthcare providers, and other siblings about what life is like for you with a sibling diagnosed with autism. To participate please email or call Lisa Kurland, LBSW, LEND Trainee: 832-860-8647 or Lisa.kurland8@gmail.com.Read More
Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex
This study of a new cream for the treatment of mild to moderate facial angiofibromas is underway in the United States and across the globe. It is anticipated that approximately 120 patients, aged 6-65, will participate in this trial over the next several months. Participation in the study will last roughly 8 months, including screening and follow up periods. If you qualify for the study, you will be responsible for daily application of the cream and completing a diary. For additional information on this study, including contact information on all participating study sites and detailed eligibility criteria, please visit clinicaltrials.gov...Read More