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 [...]
We’re excited to share research published by community member Larry Schwartz -- a statistician who gives his time generously to our Foundation -- and a team of researchers at five academic sites in the US and Israel. This important prevalence [...]
Brooklyn, New York, August 19, 2020 -- APBD Research Foundation in conjunction with the University of Pennsylvania launches a call for APBD research proposals. Letter of Intent are due to the UPenn Orphan Disease Center no later than September 18, [...]
By Feigy Weiss Rosenberg July 28, 2020 Editor’s Note: This is the first in a series of articles written by Feigy W. Rosenberg, daughter of the late Gregory Weiss who was one of the co-founders of the APBD [...]
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 [...]
Adult Polyglucosan Body Disease Research Foundation’s incoming co-president Jeff Levenson recently sat down -- by phone -- for an interview with Daniel Levine who is working on a “Rare Leaders” series for Global Genes. Global Genes is a non-profit 501(c)(3) [...]
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 [...]
On June 22, the Adult Polyglucosan Body Disease Research Foundation hosted its first Biomarker Workshop to facilitate a vigorous exchange among researchers and patient advocates regarding potential biomarkers for drug discovery and development targeting APBD. The Workshop -- hosted [...]
We are excited to have “Life Through a Lens” featured at the Berkshire Jewish Film Festival on July 6. Additionally, we are honored to have Dr. Edwin H. Kolodny -- Chair of our Scientific Advisory Board -- conduct a TalkBack [...]
