Winter Update
Penn Medicine Orphan Disease Center Million Dollar Bike Ride

Saturday, June 8, 2019
Philadelphia, PA

Virtual Riders Welcome!
Stay tuned for more details
in our next update.
Grants Awarded to Drs.
Minassian and Kakhlon 
Two APBD researchers were awarded the funds donated to the 2018 Million Dollar Bike Ride and matched by the University of Pennsylvania.

Dr. Or Kakhlon will apply these funds for the continued development of his recently discovered "Compound A" in pre-clinical mouse studies for APBD. Dr. Berge Minassian will investigate gene therapy to observe symptom improvement in mice with APBD.

The Foundation is excited to see these promising research projects move forward and appreciates your support.

Click here to read more about these research projects.
“Life Through a Lens” Makes Its International Debut!

The short documentary, “Life Through a Lens,” which features the story of Hollywood photographer Robert Zuckerman’s APBD journey, has been accepted to two film festivals in the United Kingdom. The 12-minute documentary tells the story about Zuckerman’s diagnosis of APBD and his resolve to courageously face his challenges and live life to the fullest.

The International Filmmaker Festival of World Cinema London 2019 will take place in London from February 17 - 23 with the screening of the film on February 20. The film has been nominated for Best Editing of a Short Documentary and Best Director of a Short Documentary. It was directed and produced by Dr. Jeffrey Levenson with his daughter Ronete Levenson.

The documentary will also be viewed during the Crystal Palace International Film Festival, which will run from March 7th - March 30th.
Jan 2019 Poster
Please email Molly at if you are interested in hosting a film screening in your area.

Want to share your story to raise awareness of APBD?

In honor of Rare Disease Day, February 28th, the Foundation will be sharing patient stories via our website, Twitter and Facebook. 

Please email Molly at to be a part of the exciting online effort to raise awareness and funds. 

Click here to see an example.  
Patient Survey Underway

APBDRF is conducting a survey of APBD patients to gain additional insight into symptoms and progress of the disease in order to assist with future research studies and pharmaceutical development. The goal is to have 100% participation from our community. Please email Molly at to be mailed the 15 minute paper survey. Please share with others who might be affected by APBD. The more people who complete the survey, the better the data.
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Thanks for your support!
APBD Research Foundation | | | Phone: 646.580.5610