Bcureful® Helps Fund Promising Tuberous Sclerosis Complex Research Project at NYU Langone Medical Center

Everolimus Drug Study with TSC Patients to Measure Impact on Brain

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Bcureful® Board members Lori Nerheim of Chicago and Laurie Marshall of New York City present Bcureful’s award to Dr. Orrin Devinsky, Director of the Comprehensive Epilepsy Center at NYU Langone Medical Center, to help fund his everolimus research project for Tuberous Sclerosis Complex patients.

'Now is one of the most exciting times in TSC research,' said Dr. Deinsky. 'Among all disorders, I think TSC is one in which medical research has made some of the greatest advances in the past decade.'

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 research,” said Dr. Devinsky. “Among all disorders, I think TSC is one in which medical research has made some of the greatest advances in the past decade. We have identified the two TSC genes, we know where they are, we know what proteins they code for... and hope for a cure for TSC is realistic.”

This study will look at the effects of the everolimus chemotherapy drug and its impact on the brain before TSC patients undergo brain surgery. Approval by the FDA in August 2012 was based on a greater than 50% reduction in tumor volume in trial patients. The goal of this study is to understand the effects of the drug on the basic problem in TSC which is the “brakes” are removed on a critical pathway that regulates cell growth. Understanding how everolimus “puts the brakes back” on this pathway can help us to improve existing therapies, identify new targets, and hopefully understand how this drug can help control seizures.

Julie Scroggins, Founder and Chair of Bcureful, shared, “Bcureful’s mission is to accelerate research towards a cure for TSC and we are proud to make this award to NYU Langone Medical Center for this very promising study.”

The research project is ready to begin and awaiting final Investigational New Drug (IND) approvals, but had a gap in funding of $100,000.00 prior to this donation. Dr. Devinsky explained, “We need additional funding. We need it for targeted, focused, translational projects that could really make a difference for people... and there is a gap in the funding right now. There is only so much funding available for groups like ours and many others that want to do so much more to help individuals and families with TSC, but we are limited in the amount of research that we can do. Bcureful has the opportunity to fill that gap.”

“We are committed to raising the additional $85,000.00 needed to fully fund this research project and improve the future for so many affected by TSC and related conditions,” added Scroggins.

Bcureful is a 501(c)(3) non-profit organization founded to focus resources on Tuberous Sclerosis Complex, or TSC. TSC is a genetic disorder that affects 1 in 6,000 newborns causing non- malignant tumors to develop in the brain and other vital organs. Although the growths are almost always benign, they can cause devastating effects on multiple aspects of development. It is estimated that 1 to 2 million people worldwide have TSC. Research for TSC has led to breakthroughs in autism, epilepsy and cancer.

To learn more about Bcureful and make a donation, visit: http://www.Bcureful.org.

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Bcureful® Board members Lori Nerheim of Chicago and Laurie Marshall of New York City present Bcureful’s award to Dr. Orrin Devinsky, Director of the Comprehensive Epilepsy Center at NYU Langone Medical Center, to help fund his everolimus research project for Tuberous Sclerosis Complex patients.


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