RETT SYNDROME RESEARCH TRUST WEBSITE

by Monica Coenraads

Recently, RSRT Professional Advisory Council member Jonathan Epstein and I participated in the Partnering for Cures meeting in New York City organized by FasterCures, a think-tank of the Milken Institute. In attendance were over 600 people, including heads of medical research organizations, executives from pharmaceutical companies and biotechs, policymakers, philanthropists and representatives from NIH. The goal of the meeting was to identify the challenges involved with delivering treatments and cures and to brainstorm about possible solutions.

Information was shared with participants via plenary sessions as well as panel discussions on focused topics. Forty-two research organizations, including RSRT, were selected to present their innovative strategies. I was delighted and honored to brief this elite group on Rett Syndrome and RSRT’s efforts.

The meeting also provided opportunities to schedule one-on-one “partnering” meetings. I took full advantage and met with a variety of representatives from biotech and pharma. It was also an opportunity to reconnect with people who have been mentors and advisors to me during the past decade. People like Richard Insel, EVP of Research for JDRF, and Katie Hood, CEO of the Michael J. Fox Foundation. In some cases I finally met, face to face, people with whom I’ve been speaking on the phone for years.

A common theme throughout the meeting was the fact that the most innovative and ambitious science is not being done at pharmaceutical companies or biotech, nor is it being funded by NIH. Rather, it’s being driven by disease-specific research organizations like ours.  Why is this?

  • First, because we have a single, urgent agenda – to make the patient better.  We are not encumbered by concerns over who gets the credit or the profit as long as our constituency is healed.
  • Second, we often have the most comprehensive and accurate information on the state of research for our particular disease. From that elevated knowledge base we are often in the best position to make well-informed decisions.
  • Third, we are prepared to fund risky and ambitious projects – the kind the NIH and many other funding agencies shy away from.

RSRT is proud to be part of this game-changing scientific movement.

At the crossroads of epigenetics and neurobiology, the Trust and our research projects are gaining traction. We look forward with hope and determination to the research developments of 2010. On behalf of our trustees, scientific advisors and professional advisory council we wish you and yours a wonderful holiday season.

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