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 [...]

October 25th, 2021|

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, [...]

August 27th, 2021|

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 [...]

July 20th, 2021|

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 [...]

March 5th, 2021|

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 [...]

February 25th, 2021|

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 [...]

November 13th, 2020|

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, [...]

October 14th, 2020|

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, [...]

August 19th, 2020|

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 [...]

June 23rd, 2020|

COVID-19 Resources

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 [...]

March 27th, 2020|

Exciting Announcement for the APBD Community

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 [...]

March 21st, 2020|

Pedaling for Progress in APBD Research

The APBD community said, “Let’s Roll!” to the Penn Medicine Orphan Disease Center’s Million Dollar Bike Ride for rare disease research again this year. Our 33-member team, the “Tour de Friends,” participated from locations all over the country in their neighborhoods and in [...]

July 16th, 2019|