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 [...]
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 [...]
APBD Research Proposals Wanted
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, [...]
APBD – A Daughter’s Perspective
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 [...]
Hosting a Facebook Fundraiser for APBD Research
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 Kolodny Brings APBD into the Light at the Berkshire Jewish Film Festival
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 [...]
Global Genes’ RARE Leaders Series Puts the Spotlight on Foundation Co-President, Jeff Levenson
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) [...]
Raising Rare Disease Awareness and Funds for APBD Research When The Rules Change
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 [...]
Foundation’s Biomarker Workshop Spurs Collaboration and Hope
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 [...]
APBD Documentary Premieres at the 2020 Berkshire Jewish Film Festival
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 [...]