New York, NY – The Adult Polyglucosan Body Disease (APBD) Research Foundation has been selected to participate in a disease prevalence study led by the Rare Genomes Project. As a Chan Zuckerberg Initiative - Rare As One grantee, the [Read More]
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 [Read More]
New York, NY -- Adult Polyglucosan Body Disease (APBD) researcher Felix Nitschke, PhD at UT Southwestern Medical Center recently received a $121,268 grant to advance rare disease research from the University of Pennsylvania’s Million Dollar Bike Ride (MDBR) program. For the fifth [Read More]
TV HOST ALI ROSEN AND MASTER CHEF JEFFREY YOSKOWITZ SPREAD AWARENESS OF JEWISH GENETIC DISEASES AT “ROOTS: Jewish Genes and Cuisine” Online Event Benefited the Adult Polyglucosan Body Disease Research Foundation NEW YORK, March 5, 2021 -- Emmy-nominated TV personality [Read More]
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 [Read More]
January 4, 2021 Elliott and his family after completing their 36-mile bike ride, Double Chai for a Cure. In anticipation of his bar mitzvah [Read More]
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 [Read More]
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. [Read More]
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 [Read More]
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 [Read More]
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 [Read More]
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, [Read More]
"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 [Read More]
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 [Read More]
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, [Read More]
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 [Read More]
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 [Read More]
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 [Read More]
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) [Read More]
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 [Read More]