TSC Matters

Archive for December, 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.

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate the effectiveness and safety of lacosamide (Vimpat®) in children less than 4 years of age who have partial-onset seizures.  There are study locations in Alabama, Florida, Louisiana, Nevada, New Hampshire, Ohio, Texas, and Washington.  For more information contact Jo Anne Nakagawa at jnakagawa@tscalliance.org or 240-638-4654 for specific site location and study coordinator phone number.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

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston Children’s Hospital, Cincinnati Children’s Hospital Medical Center, University of Alabama at Birmingham, University of California at Los Angeles, University of Texas at Houston, Minnesota Epilepsy Group, PA, Stanford University, Beaumont Children’s Hospital, Washington University in St. Louis, Children’s Hospital of Orange County, Children’s National Medical Center, The Children’s Hospital of Philadelphia, Duke University Health Center, and Mount Sinai.Read More

45th Anniversary Flashback: The 2010s

Throughout 2019, the TSC 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

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

Submit your Nominations for our 2019 Volunteer Awards!

The TSC Alliance will honor up to four individuals, one Community Alliance and one adult with TSC for their outstanding dedication and commitment to the organization during its annual Volunteer Appreciation Dinner on March 5, 2020. It gives us the opportunity to recognize those volunteers who stand out for making a significant impact in their local communities.Read More

We are Seeking Volunteers for the TSC Biosample Repository

The purpose of this research project is to collect a sample of blood, tissue, fluid or other types of bodily samples from children and adults with tuberous sclerosis complex (TSC). These samples and medical information about how this genetic disorder affects you will be made available to TSC researchers to better understand TSC and hopefully other diseases such as epilepsy or autism.Read More

Important Information About Changes to Access and Availability of Generic Everolimus and Afinitor®

As of December 13, 2019, important information is available regarding changes to access and availability of everolimus, a drug used to treat several conditions associated with tuberous sclerosis complex (TSC) such as subependymal giant cell astrocytomas (SEGAs), kidney angiomyolipomas (AMLs) and certain types of seizures. Individuals with TSC may also use everolimus to treat other clinical manifestations of the disease.Read More