January Issue of The Illuminator

Jan 2016 Newsletter Edits_Page_1The January issue of the BDSRA newsletter The Illuminator is now available.  We will be sending a monthly e-newsletter so that we can share more information with you more often.  This replaces our quarterly format. Click here to read about research, board elections, fundraisers and more.
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BDSRA Annual Family Conference

BDSRA 2016 Conference LogoThe 2016 family conference will be in St. Louis, Missouri, July 14-17 at the Renaissance St. Louis Airport Hotel. Be sure to visit our 2016 BDSRA Conference page on Facebook and “like” the page to stay connected. We are excited to share the new conference logo and to be heading to the Show Me State for our BDSRA Family Conference. Online registration and hotel details will be available mid-February. Check back here often for updates and registration information. We look forward to seeing everyone in July.
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2015 BDSRA Annual Fund

Medley girlsMake your annual fund gift to BDSRA this month and double your donation. Generous donors have pledged $25,000 for this year’s annual match.  Meet their challenge and donate by December 31, 2015. To read the story of the Medley family, and the impact BDSRA had on their lives as they raised their son Jake, click here To donate now visit our donation page
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2014 Research Awards

Research PicIn 2014, the BDSRA reached out to dozens of researchers to invite Letters of Intent (LOI) or short proposals to preview work they would like to accomplish in the following year with a maximum of $60,000.  Once these LOIs were narrowed to requests for full proposals, nearly 30 researchers from universities, children’s hospitals, and industry stepped in to provide peer reviews on a volunteer basis. Noah’s Hope, Drew’s Hope, Hope4Bridget, BDSRA-Australia and the Batten Disease Family Association in the United Kingdom have partnered with BDSRA to co-fund these important projects. Meaningful Endpoints for Phase III Clinical Trials in Juvenile Batten Disease (CLN3)
Principal Investigator: Heather Adams, Ph.D., University of Rochester $45,000, BDSRA This work helps researchers working in the Juvenile, CLN3 world have a guidepost on which to judge if treatments are working.  The meaningful endpoints will be informed by years of work with CLN3 patients and their families. INCL Gene Therapy Using AAV9 Vectors (CLN1)
Principal Investigator: Steven Gray, Ph.D., University of North Carolina, Chapel Hill $50,000, BDSRA Dr.
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BDSRA Board Nominations Open

nominateThere are 2 open seats for the BDSRA Board of Directors for the new term beginning January 2016. Those interested in running for a board seat or nominating an individual should contact Mike Collins at mikec1623@gmail.com by October 25th for details. Board ballots will be mailed to all BDSRA members on November 20th. For more information go to BDSRA board nominations. Membership dues may be paid online at BDSRA Membership.
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