Chicago–based Batten Disease Organizations Recognized for Research Funding Contributions

SKOKIE, Ill. - Aug. 2, 2013 - PRLog -- Batten disease occurs in 2 to 4 of every 100,000 births in North America. With such a small patient population, creating the funding necessary for ongoing research is a challenge. At the Annual Conference of the Batten Disease Support & Research Association (BDSRA) held in July, Noah’s Hope and Hope4Bridget were awarded a certificate of appreciation recognizing their partnership with the BDSRA to support research initiatives.

Noah’s Hope and Hope4Bridget, through their partner organization, Cures Within Reach, have committed over $200k to research projects working towards a treatment or cure for Batten disease. These funds have been raised through persistent fund-raising and awareness raising events, as well as corporate grants. Projects funded through the BDSRA include research at Weill-Cornell Medical College and the University of New Jersey to determine biomarkers for disease progress as a foundation for evaluating treatment efficacy as well as the creation of an online patient registry for clinicians, patients and caregivers.

In addition to research funded in conjunction with the BDSRA, Noah’s Hope and Hope4Bridget are independently providing support to projects repurposing existing FDA-approved drugs for Batten Disease. A project at Rush University is testing the ability of fibrate drugs to up-regulate an enzyme missing in children suffering from Batten Disease. Another project at Albert Einstein College of Medicine in final pre-clinical stages is testing an existing drug for its ability to strengthen the membrane around brain cells, which become weak and leaky in the Batten disease progression.

Both Noah’s Hope and Hope4Bridget are under the umbrella of Cures Within Reach, a 501(c)3 non-profit organization whose mission is to save patient lives through research repurposing existing devices, drugs and compounds for disease for which there is no currently effective treatment. This research model is particularly fast, cost-effective and often under-utilized.

These organizations together fund an average of $75-100k of new research every year to fulfill their mission. So the success of their ongoing fundraising efforts is critical to reach their ultimate goal of changing outcomes for their families and others touched by Batten. Upcoming fundraising events for Batten Disease include the “Housewalk for Hope” in Downers Grove, IL on September 7th and “A Fifth Season” fund-raising evening at Cotillion Banquets in Palatine, IL on November 16th, 2013. More information can be found at www.cureswithinreach.org/about-us/partnering-organizations