Summer Update

Thank you for stopping by the Adult Polyglucosan Body Disease (APBD) Research Foundation information booth at the AAN meeting in Philadelphia last May.    This e-newsletter provides a recent update on the ongoing activities of the APBD Research Foundation. We periodically share news that would be of interest to medical professionals.   Please read and feel free to reach out with any questions. Please note the last section where you can order copies of our new brochures for both medical and lay audiences to be sent directly to you.   We look forward to keeping in touch.    Best, The APBD Research Foundation Team

Thank You to our Supporters for Another Successful Million Dollar Bike Ride The APBD community said, “Let’s Roll!” to the Penn Medicine Orphan Disease Center’s Million Dollar Bike Ride for rare disease research again this year. Our 33-member team, the “Tour de Friends,” participated from locations all over the country in their neighborhoods and in their gyms.   Under the rules of the Bike Ride, the University of Pennsylvania’s Orphan Disease Center matched the first $30,000 raised by our community.  Thanks to our generous donors, the university is now holding a total of just over $100,000 for release on January 1, 2020, to top APBD research scientists. Click here to read more.

Foundation Interacts with Neurologists at American Academy of Neurology Meeting  For the first time, the APBD Research Foundation had an exhibit booth at the American Academy of Neurology (AAN) meeting held this past May in Philadelphia. Each year the AAN meeting gathers approximately 14,000 attendees from all over the world –including neurologists and other professionals in the neurological field. The APBD Research Foundation booth in the exhibit hall gave us an opportunity to have conversations with neurologists and inform them about diagnostic indicators of APBD and about research advances. We handed out our new brochures, testing locations as well as a list of medical publications on APBD. Click here to read more.

Leading Scientists and Physicians in Neurology Report on Research Progress at 13th Foundation Scientific Advisory Board Meeting The Foundation’s Scientific Advisory Board (SAB) Meeting held on May 5, 2019 brought together an international research team to discuss the latest advances in APBD research during a dinner held in Philadelphia. Led by SAB Chairman Edwin H. Kolodny, M.D., the meeting provided an opportunity for many of the scientists to update each other on current research and to further opportunities for collaboration. Dr. Kolodny, Professor Emeritus of Neurology, NYU Langone Medical Center, provided an overview of recent work in the field. He summarized the varied approaches now in development aimed at reducing the production of polyglucosan bodies, the malformed glycogen that may be a source of APBD clinical symptoms. Among the approaches being studied are methods for decreasing the amount of glycogen synthase, a protein that promotes glycogen formation; stabilizing the GBE (glycogen branching enzyme) protein that will result in the formation of healthy glycogen; and the use of viruses to carry healthy glycogen-forming genes into the body. Click here to read more.

New APBD Brochures Available The APBD Research Foundation is proud to announce that we have two updated brochures available online and in print. The physician's booklet gives a detailed overview of APBD for medical professionals, while the general information brochure helps people better understand APBD. Please click the links below to view the new brochures. APBD Physician's Booklet APBD General Information Brochure Be sure to share these links with family and friends so they can learn more about APBD. Click here and fill out the form to order printed copies to be mailed to you for sharing at local hospitals and community centers to increase APBD awareness.

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APBD Research Foundation | info@apbdrf.org |  www.apbdrf.org | Phone: 646.580.5610