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Last updated on April 18, 2014 at 21:21 EDT

Latest Tuberous Sclerosis Stories

2014-04-04 23:40:53

Fundraising gala for Tuberous Sclerosis Complex (TSC) will be held at Lake Forest’s Deer Path Inn on May 15th, Global TSC Awareness Day. Lake Forest, IL (PRWEB) April 03, 2014 WISH I MAY, Bcureful’s third annual gala and wine dinner organized to raise funds in support of research and a cure for Tuberous Sclerosis Complex (TSC), a genetic disorder that effects one in 6,000 newborns, is set for Thursday, May 15 at the Deer Path Inn of Lake Forest. The wine dinner presents a menu...

2013-12-06 00:20:48

SILVER SPRING, Md., Dec. 6, 2013 /PRNewswire-USNewswire/ -- A new white paper from the Tuberous Sclerosis Alliance (TS Alliance), entitled "Vigabatrin-Associated Visual Field Loss (VAVFL): What You Need to Know," was released today at the American Epilepsy Society annual meeting in Washington, DC. The white paper was written by Darcy A. Krueger, MD, PhD, Associate Professor, Clinical Pediatrics and Neurology, Tuberous Sclerosis Clinic, Cincinnati Children's Hospital. Vigabatrin is...

2013-10-10 23:04:12

The peroxisome, a tiny intracellular organelle, was discovered in the mid-1960s, and for nearly 50 years scientists were unsure of how it and TSC2 worked. Now a team at Texas A&M Health Science Center (TAMHSC) Institute of Biosciences and Technology (IBT) know that TSC2 keeps peroxisomes at the right levels to maintain healthy cells. Houston, TX (PRWEB) October 10, 2013 When it comes to survival on the cellular level, mysteries have abounded for decades. In a paper published in the...

2013-10-02 23:26:53

Multi-disciplinary TSC Center to Provide Greater Access and Quality of Care to TSC Patients throughout the Midwest Chicago, IL (PRWEB) October 02, 2013 Bcureful®—a non-profit organization whose mission is to accelerate research towards a cure for Tuberous Sclerosis Complex (TSC)—presented its inaugural donation in the amount of $20,000.00 to launch the new Tuberous Sclerosis Complex Center at Ann & Robert H. Lurie Children’s Hospital of Chicago. Lurie Children’s is...

2013-10-02 23:01:39

Despite federal incentives for drug companies to create treatments for rare diseases, thousands of people are still searching for lifesaving therapies. In many cases, patients and those working on their behalf are taking matters into their own hands. Bethesda, MD (PRWEB) October 02, 2013 Katheryn Elibri, whose 7-year-old daughter has a rare genetic disease known as CDKL5 and has seizures almost daily, helped begin a foundation to fund research for a cure. Other parents—like Lisa Schill,...

2013-09-27 23:03:52

Everolimus Drug Study with TSC Patients to Measure Impact on Brain New York, NY (PRWEB) September 27, 2013 Bcureful® presented a check in the amount of $15,000.00 to Dr. Orrin Devinsky, Director of the Comprehensive Epilepsy Center at NYU Langone Medical Center, for his upcoming everolimus research project. Bcureful Board members Lori Nerheim of Chicago and Laurie Marshall of New York City presented the check to Dr. Devinsky. “Now is one of the most exciting times in TSC...

2013-09-23 08:25:03

Two Peer-Reviewed Papers Featured in October Issue of Pediatric Neurology SILVER SPRING, Md., Sept. 23, 2013 /PRNewswire-USNewswire/ -- Today, the Tuberous Sclerosis Alliance (TS Alliance) formally announced newly updated clinical consensus guidelines for the diagnosis, surveillance and management of tuberous sclerosis complex (TSC). To communicate the recommendations to healthcare professionals, the October issue of Pediatric Neurology includes two peer-reviewed papers detailing the...

2013-07-16 20:21:31

"Bench-to-bedside" breakthrough is collaboration between hospital's Jan and Dan Duncan Neurological Research Institute, Blue Bird Circle Clinic for Pediatric Neurology and Cincinnati Children's Hospital Medical Center Video discussing the drug trial here: https://waystogive.texaschildrens.org/page.aspx?pid=1937 HOUSTON, July 16, 2013 /PRNewswire-USNewswire/ -- Everolimus, a drug used to treat cancers and prevent rejection of transplanted organs, reduced the occurrence of seizures...

2013-07-16 12:28:10

Further Studies Could Determine Benefit to Epilepsy Patients Without TSC CINCINNATI, July 16, 2013 /PRNewswire-USNewswire/ -- A drug originally developed to prevent the rejection of transplanted organs has now been shown to dramatically reduce seizures in patients with tuberous sclerosis complex (TSC) - a genetic disease characterized by benign tumors on multiple organ systems. TSC is estimated to affect more than a million individuals throughout the world. (Logo:...

2013-05-02 08:35:50

SILVER SPRING, Md., May 2, 2013 /PRNewswire-USNewswire/ -- On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the second annual TSC Global Awareness Day. On this day, thousands of individuals and families affected by TSC will join together to increase public awareness of the rare disease and share their stories of hope for the future. This year's TSC Global Awareness Day will also highlight...