TSC Matters

Archive for April, 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.

International TAND Research Project Awarded Funding

Congratulations to Drs. Petrus de Vries (University of Cape Town) and Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) on being awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation. Funding for the TANDem Project was awarded at a King Baudouin Foundation awards ceremony on Thursday, April 4, 2019.Read More

Bid Now in Our Exclusive Comedy for a Cure Silent Auction!

The Tuberous Sclerosis Alliance’s 18th Annual Comedy for a Cure happens this Sunday, April 7 in Hollywood.  This year for the first time, we are thrilled to offer you the opportunity to bid in our exclusive Comedy for a Cure Silent Auction even if you are unable to attend in person.  You’ll be able to bid early (and often!) via our special online auction site at www.comedyforacure.org.  Simply click “Auction Catalog” to view all available auction items. Please Note: A credit card is required to bid. Silent Auction bidding starts at 9 am Pacific Time, Thursday, April 4, and ends Sunday, April...Read More

TSC Preclinical Consortium Meeting

The TS Alliance launched the TSC Preclinical Consortium in 2016, in collaboration with industry and academia, to test the efficacy of candidate therapeutic drugs and advance the best to the clinical stage. The Consortium started running experiments in August 2016 and have run 21 compounds to date with nine in progress and three others planned for 2019. Additionally, 10 companies have joined the Consortium since its inception. The Preclinical Consortium is a cornerstone of the TS Alliance’s five-year Research Business Plan with a goal to have 75 mechanisms or combinations tested in the Preclinical Consortium by 2023.Read More

2018 Volunteers of the Year

On Thursday, March 7, 2019 the Tuberous Sclerosis Alliance held its annual Volunteer Appreciation Dinner to honor our incredible volunteers across the country and celebrate 45 years of inspiration, innovation and hope. As part of the evening’s festivities we recognized four Volunteers of the Year (the “Franny Award”), a Keith Hall Distinguished Leadership Award winner and the Community Alliance of the Year (the “Dreamer Award”). Congratulations to all our Volunteers of the Year!Read More

45th Anniversary Flashback: The 1970s

Throughout 2019, the Tuberous Sclerosis Alliance will celebrate our sapphire, 45th anniversary. This milestone is only possible due to the tenacity of untold numbers of tuberous sclerosis complex (TSC) community members, physicians, researchers, staff and board members, partner organizations and other supporters who help us work toward our mission to find a cure for TSC while improving the lives of those affected.Read More

April Volunteer Opportunities Available

Champion Our Cause: Join the TS Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.”  – Oscar Wilde The TS 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. They have propelled our organization to levels once thought impossible — from the original four volunteer mothers who started the organization in 1974 to nearly 3,000...Read More

Congratulations Dr. Martina Bebin!

Congratulations to Dr. Martina Bebin, former Tuberous Sclerosis Alliance Board Member and TSC Clinic Co-Director at The University of Alabama at Birmingham, for being recognized as a 2019 Yellowhammer Woman of Impact! Thank you for your relentless dedication to advancing tuberous sclerosis complex (TSC) research and for your incredible compassion toward those affected by TSC!Read More

TAND Parent/Caregiver Survey: We Need Your Input!

As part of our TSC-Associated Neuropsychiatric Disorders (TAND) Initiative we’ve partnered with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences managing behavior in children with neurological conditions. Results will be shared with health care providers, so they are better able to serve children with disruptive and harmful behaviors. The survey is for parents and caregivers of children with neurological conditions and should take 10-15 minutes to complete.Read More

Upcoming Step Forward to Cure TSC Walks

“And that is how change happens. One gesture. One person. One moment at a time.” ― Libba Bray, The Sweet Far Thing 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.Read More