APBD is a 24/7/365 battle. From getting an accurate diagnosis, to seeking support, to finding trusted resources, to connecting with community members who understand, and working towards a cure, the APBD Research Foundation stands with you on this journey. [...]
THANK YOU! We had 89 enthusiastic and imaginative virtual riders on the Tour de Friends team this year! The selfies we share here were fun to collect but also accomplish something very important. They show donors, researchers, physicians, pharmaceutical leaders, and government decision [...]
Meet Our Honoree Dr. Jesse Cedarbaum is Professor, Adjunct of Neurology and Psychiatry at Yale Medical School and Founder and Head of Coeruleus Clinical Sciences, LLC. Dr. Cedarbaum currently serves on the Foundation’s Pharmaceutical Development Committee, where he is helping [...]
By Gillian Neimark Adult Polyglucosan Body Disease (APBD) is one of 7,000 rare diseases in the U.S. There are currently no effective treatments for the challenging neurodegenerative disorder. That may change with the publication of a study that identifies two [...]
APBD is a 24/7/365 battle. From getting to an accurate diagnosis, to seeking support, to finding trusted resources, to connecting with community members who understand, and working towards a cure, the APBD Research Foundation stands with you on this journey. [...]
The APBD Research Foundation today announced that Angela Genge, MD, FRCPS, -- executive director of the Clinical Research Unit at the Montreal Neurological Institute-Hospital -- has joined the Foundation’s Scientific Advisory Board. "Dr. Genge is a world-renowned expert in rare [...]
This November, our “We Are APBD” explainer video and our documentary, “Life Through a Lens,” will make their debut on the Disorder Channel. Earlier this spring, when movie theaters and other entertainment venues around the world closed their doors in [...]
The APBD Research Foundation has been awarded €4,500 ($5,270) by Europe-based Society for the Study of Inborn Errors of Metabolism. The award will be used to support patients and families impacted by APBD. The SSIEM is a nonprofit organization committed [...]
We hear you, and we are here for you. Announcing the Caregiver/Family Chat Group If APBD touches your life through a family member or loved one, whether you are a hands-on caregiver or within the circle of emotional support, [...]
"It's so easy!" shared Sheri, a member of our APBD Chat group, about shopping on AmazonSmile. "I buy all kinds of stuff and everything I buy donates to the APBD Research Foundation. I even bought an entire office set, including [...]
By Susan Coddon Earlier this summer, I hosted a Facebook fundraiser for my birthday and raised $671 to advance APBD research. I was so touched to see my family and friends (some from as far back as high school) step [...]
Dr. Edwin H. Kolodny — chair of the APBD RF’s Scientific Advisory Board — recently joined the Berkshire Jewish Film Festival organizers in a special TalkBack interview to raise the public profile of APBD. Dr. Kolodny met with the Festival [...]
By Harriet Saxe, Member of the Board - APBD Research Foundation View pictures from our APBD Tour de Friends members here… When it was scheduled for June 13, 2020, no one imagined that a pandemic would impact plans for this [...]
Or Kakhlon, PhD -- one of our research grant recipients -- working at Hadassah Medical Organization presented his APBD research findings at the 2020 Global Genes RARE Drug Development Symposium. The RARE Drug Development Symposium, organized by Global Genes in [...]
We are pleased to have Professor Qing Lu join our Scientific Advisory Board. Qing Lu, PhD is a Professor of Biostatistics at the University of Florida. Professor Lu completed his undergraduate training in Applied Mathematics & Industrial Foreign Trade from [...]
A list of resources, information and activities. Click on the text of any of the items listed to go to the website. Government Resources: CDC (Center for Disease Control) WHO (World Health Organization) Rare Disease Organizations Resources: Global Genes NORD [...]
Dear Patient Community, Family Members, Cheerleaders, Donors, Researchers and Clinicians: Today is a special day. We have important news to share with you. We are excited to announce that we are one of 30 recipients of a $450,000, two-year Rare [...]
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 [...]
The APBD Community said, "Let's Roll!" to the Million Dollar Bike Ride for rare disease research. Some of the 36 members of our "Tour de Friends" team rode bikes on the official course in Philadelphia, and some rode virtually in [...]
THE JEWISH DAILY FORWARD The Benefits of ‘Kindsight’ Read Article: http://blogs.forward.com/the-arty-semite/192725/the-benefits-of-kindsight/#ixzz33fwCE7fM