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.

Join Us at the Regional TSC & LAM Conference in Los Angeles!

The fifth and final Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is Saturday, November 2 starting at 8:30 AM at the UCLA Meyer & Renee Luskin Conference Center in Los Angeles, CA! This free one-day conference will feature local leading researchers and clinicians specializing in TSC and lymphangioleiomyomatosis (LAM). Register NowRead More

Upcoming Step Forward to Cure TSC Walks

Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC). Step Forward to Cure TSC® is the TS Alliance’s largest national fundraising program, featuring a series of walks organized by local volunteers and families who are affected by TSC. Successfully launched in more than 30 communities across the United States, this grassroots effort not only generates vital funds for TSC research and support programs but also raises awareness about this disorder.Read More

TSC Research: Our Vision for 2020

As part of our 45th Anniversary Celebration, during the Fund a Cure portion of the live auction we raised funds to support two important research initiatives that we believe will alter the course of this disease: The Newborn Screening Initiative and the TSC-Associated Neuropsychiatric Disorders (TAND) Initiative.Read More

Subscribe to TSC Now

TSC Now is the TS Alliance’s podcast series, which features interviews with clinicians, researchers, TS Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND), seizure control and more. Haven’t listened yet? Check out our last three episodes:Read More

What TSC Means to Me Drawing Contest

In September, the Tuberous Sclerosis Alliance of Indiana held a “What Tuberous Sclerosis Complex (TSC) Means to Me” Drawing Contest for family members, caregivers, friends, and individuals with TSC. Contestants were asked to draw or paint a picture that depicts what TSC means to them. The winning pieces will be featured in the next Perspective Magazine, but above is a sneak peek of one of the winning pieces from Audra (age 10).Read More

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us for one of our upcoming free, one-hour informational calls: Thursday, October 24, 2019 “Open Forum” presented by Adult Regional Coordinators 8:00 P.M. (Eastern), 7:00 P.M. (Central), 6:00 P.M. (Mountain), 5:00 P.M. (Pacific) Thursday, November 14, 2019  “Sleep Issues and TSC” presented by Tanjala T. Gipson, MD; Director, TAND Clinic at LeBonheur Children’s Hospital 8:00 P.M. (Eastern), 7:00 P.M. (Central), 6:00 P.M. (Mountain), 5:00 P.M. (Pacific) To participate simply use the toll-free call-in number: 1-866-613-5223 then enter access code: 4334003#. If you have questions or would like...Read More

October Note from the President & CEO

On Thursday, October 3 the Tuberous Sclerosis Alliance celebrated our 45th Anniversary Gala at the Edison Ballroom in New York City. This magical evening brought together more than 500 people, including families and individuals affected by tuberous sclerosis complex (TSC) from across the country, past and present board members, leading TSC researchers and clinicians, many of our corporate partners and representatives from other patient advocacy nonprofits with whom we frequently collaborate to move research and community programs forward. Together with the overwhelming support of the TSC community and those in attendance we raised $1 million to support TSC research and...Read More

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epilepsy. Toward this end, they are developing an inhaler rescue therapy that stops seizures in their tracks. If you have frequent, predictably-patterned seizures, you may qualify for a paid trial of this product. Visit epilepsyhealthstudy.com.Read More

2019 International TSC Research Conference Review

The 2019 International TSC Research Conference: Changing the Course of TSC, co-sponsored with Tuberous Sclerosis Canada Sclérose Tubéreuse (TSCST) and the TS Alliance of Mexico, was held June 20-22, 2019 in Toronto, Canada. The conference brought together 251 people from 28 countries and featured 34 oral presentations and 62 posters. A full summary of the conference will be featured in the Fall 2019 issue of Perspective magazine. You can subscribe to Perspective here.Read More

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us for one of our upcoming free, one-hour informational calls: Thursday, September 26, 2019 “LAM and TSC” presented by Karen D. Agricola, APRN, FNP-BC, Cincinnati Children’s Tuberous Sclerosis Clinic 8:00 P.M. (Eastern), 7:00 P.M. (Central), 6:00 P.M. (Mountain), 5:00 P.M. (Pacific) Thursday, October 24, 2019 “Open Forum” presented by Adult Regional Coordinators 8:00 P.M. (Eastern), 7:00 P.M. (Central), 6:00 P.M. (Mountain), 5:00 P.M. (Pacific) Thursday, November 14, 2019  “Sleep Issues and TSC” presented by Tanjala T. Gipson, MD; Director, TAND Clinic at LeBonheur Children’s Hospital 8:00 P.M....Read More