Andrew’s Dream
"I dream that someday, sooner than later, a treatment and cure will be found. APBD has robbed me of what I was and how much I know I can be." - Andrew
Beth and Jeff’s Dream
"We dream of Jeff being able to walk unassisted! Let’s find a cure for APBD!" - Beth and Jeff
Penrod Ronson’s Dream
"I dream of APBD research that discovers both a cure & treatments to alleviate symptoms and also generate a broader awareness of this very rare -- and yet not the rarest -- of genetic disorders." - Penrod Ronson with his [Read More]
Deberah’s Dream
"I dream about APBD research that finds a cure!" - Deberah
Sheila’s Dream
"I dream about APBD research that that finds a cure to help me walk "normally", function in daily activities "normally", be able to drive, with my brain functioning with stability..." - Sheila
Kathi’s Hope
"I feel blessed to be living with all my support and love. I am hoping gene therapy can help."
Friends of the community
Friends showing their support for APBD community by wearing stripes!
The Orphan Disease Center Awards Two Research Grants for Adult Polyglucosan Body Disease (APBD)
The APBD Research Foundation and the Orphan Disease Center, part of the Perelman School of Medicine at the University of Pennsylvania, are pleased to announce the recent winners of two ‘Million Dollar Bike Ride’ research grants. These important research grants will [Read More]
Congratulations from Disorder: The Rare Disease Film Festival 2020
We are honored to have been chosen to participate in this year’s Rare Disease Film Festival to take place May 17th and 18th in New York City*. There were more than a dozen sponsors in 2019, including NORD, Global Genes, [Read More]
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 [Read More]
Leading Scientists and Physicians in Neurology Report on Research Progress at 13th Foundation Scientific Advisory Board Meeting
Leading Scientists and Physicians in Neurology Report on Research Progress at 13th Foundation Scientific Advisory Board Meeting The Foundation’s Scientific Advisory Board (SAB) Meeting held on May 5, 2019 brought together an international research team to discuss the latest advances [Read More]
Foundation Interacts with Neurologists at American Academy of Neurology Meeting
Foundation Interacts with Neurologists at American Academy of Neurology Meeting For the first time, the APBD Research Foundation had an exhibit booth at the American Academy of Neurology (AAN) meeting held this past May in Philadelphia. Each year the AAN [Read More]
New APBD Brochures Available
New APBD Brochures Available The APBD Research Foundation is proud to announce that we have two updated brochures available online and in print. The physician's booklet gives a detailed overview of APBD for medical professionals, while the general information brochure [Read More]
David in Maryland
Current Age: 73 Onset of Symptoms: ~50 Age at Diagnosis: 63 "In 2011 I was diagnosed with a rare genetic disease called Adult Polyglucosan Body Disease (APBD). This diagnosis was made about 13 years after I first experienced symptoms [Read More]
Chuck in Oregon
Current Age: 67 Onset of Symptoms: 40's Age at Diagnosis: 60 "I was in my 40’s. The strange problem began with some tingling at the end of one toe. I padded my foot so I could continue the running [Read More]
Robert in Florida
Robert, in the black shirt, pictured with the Weiss brothers - Michael, Emil, the current president of the APBD Research Foundation, and Gregory, the founder and past president. Current Age: 63 Onset of Symptoms: 48 Age at Diagnosis: 55 "Nine [Read More]
Yvonne in the Netherlands
Current Age: 59 Symptoms onset: 40 “I am APBD patient. I have known my proper diagnose for 3 years now. Before they thought that I had Hereditary Motor and Sensory Neuropathy: HMSN type II. I am the only one [Read More]
Lori in Florida
Current Age: 60 Symptoms onset: ~40 “At approximately age 40 I started to feel different, I wasn’t sure what it was. I had some fatigue, some balance issues, but I kind of ignored it. I had a bad back, [Read More]