TSC Matters

Archive for August, 2019

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.

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

Upcoming Community Events

Northern California Picnic Saturday, August 25, 2019, 11 AM – 2 PM Contact: Lilian Ansari, (510) 388-6889 Family style picnic with main dish provided. Please sign up to bring a side/dessert.   Youmans 14th Annual Family & Friends Tuberous Sclerosis Fundraising BBQ (Lakewood, CO) Saturday, September 7, 2019, 2 – 8 PM Join Bill and Nancy Youmans for a meal, friendship, fun and most importantly to join them in this fight against tuberous sclerosis complex (TSC). In addition to great food, door prizes and other fundraising activities will benefit the Tuberous Sclerosis Alliance (TS Alliance). Learn More   13th Annual Heather Joy TS/LAM Golf Outing...Read More

Become a Junior Leader!

We are looking for Junior Leaders for the 2019-2020 school year. The TS Alliance offers this opportunity for young adults with TSC, or their siblings, to get involved with local Community Alliances to offer support while raising awareness for TSC. Throughout the school year, program participants will complete a series of awareness and support activities, concluding with an exit survey. Participants must be a young adult aged 17-23 with TSC, or a sibling, and be pursuing, or planning to pursue, some form of further education (i.e. certification, trade school, 2-year program, or 4-year+ program). Four applicants will be accepted into...Read More

Join Us at the Regional TSC & LAM Conference in Chicago!

The third Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is Saturday, September 7 starting at 8:30 AM at the Healtyh Science Campus at Loyola University in Chicago, IL! This free one-day conference will feature local leading researchers and clinicians specializing in TSC and lymphangioleiomyomatosis (LAM). Learn More Register NowRead More

TSC Clinic Experience of Care Survey

The TS Alliance would like to know about your experience at the TSC Clinic you/your child go to for care.  Your comments in this online survey will be shared with the TSC Clinic Director and staff.  The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you.   We invite you to complete this survey any time after you’ve been to the TSC Clinic. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. Take the SurveyRead More

Listen 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 first three episodes: Episode 1: TSC Global Day, 45th Anniversary and the Future of TSC Research Episode 2: Epilepsy in TSC and Laser Ablation Surgery with Dr. Daniel Curry Episode 3: The 2019 International TSC Research Conference You can subscribe to TSC Now on Spotify, Apple Podcasts, TuneIn, Stitcherand Google Podcasts.Read More