When a 13-Year-Old Takes on The Fight for a Cure!
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 [...]
APBD Ad Debuts at Rare New England’s Annual Conference
October 25, 2021 We're excited to share this ad that we developed for the Rare New England's (RNE) Annual Conference this past October. Raising the public profile and recognizing the hallmark symptoms of APBD is a crucial facet of [...]
Developing Healthcare Guidelines for APBD and Related GSD IV Diseases: A Collaborative Effort
September 30, 2021 New York, NY – The APBD Research Foundation is excited to partner with the Association for Glycogen Storage Disease (AGSD) on the development of healthcare guidelines for APBD and related Type IV Glycogen Storage (GSD [...]
A Daughter’s Reflections on APBD
Editor’s Note: This is the second 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 Research Foundation. Feigy shares from her heart, hoping [...]
Call for APBD Research Proposals — MDBR Funding Opportunity
August 26, 2021 The APBD Research Foundation is pleased to announce the opportunity of one $99,025 grant or two $49,513 grants through the University of Pennsylvania's Orphan Disease Center Million Dollar Bike Ride Pilot Grant Program. For six consecutive years, [...]
We’re Looking to Hire a Communications & Development Manager
We're looking to hire a passionate and experienced Communications and Development Manager to join our small team during this crucial period of growth in our community.
APBD Research Foundation Selected to Participate in Rare Genomes Project Disease Prevalence Study
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 [...]
2021 APBD Tour de Friends Team at the Million Dollar Bike Ride
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 [...]
Protected: APBD – A Daughter’s Heart
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UT Southwestern Scientist Receives 2020 MDBR Grant to Develop a Novel Therapeutic Strategy for Adult Polyglucosan Body Disease
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 [...]
News Release –ROOTS: Jewish Genes and Cuisine
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 [...]
Meet Our Honoree: Dr. Jesse Cedarbaum
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 [...]
New Research Paves the Way for Therapeutics for APBD
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 [...]
Most Read APBD Articles of 2020
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. [...]
Angela Genge, MD, FRCP(S) Joins the Foundation’s Scientific Advisory Board
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 [...]
Foundation Partners with The Disorder Channel to Raise the Public Profile of APBD
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 [...]
Foundation Receives Patient and Family Support Grant from the Society for the Study of Inborn Errors of Metabolism
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 [...]
Caregiver/Family Chat Group
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, [...]
Why Sheri Loves AmazonSmile!
"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 [...]
RESEARCH UPDATE: How Many APBD Patients Are There? New Research Zeroes in on Ashkenazi Jews in the US
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 [...]