Winter Update
Grant Winners Receive Awards from Million Dollar Bike Ride
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 - Dr. Baodong Sun of Duke University School of Medicine, who is investigating a gene therapy, and Dr. Or Kakhlon of Hadassah Medical Center, who is exploring small molecule treatments.

Thanks to the many generous supporters of the 2019 Bike Ride, more than $105,000 was raised, constituting the largest allocation to the Foundation's 2020 research budget to combat APBD.  A total of 33 bike riders rode the streets in their hometowns to support the cause. (Click here to read the entire press release.)

Our goal for this year's Million Dollar Bike Ride is to raise $75,000, which would total $105,000 for research in 2021 with Penn's $30,000 match, and to have at least 30 bikers (riding at the event in Philadelphia or in their hometown).

Click here to register to become one of our 30 virtual riders for the 2020 bike ride. We need YOU on our team to ensure this year is a success. (Registration fee is only $60 through March!)
Rare Disease Day - Saturday, February 29
This year we are joining NORD's (National Organization of Rare Disorders) social media effort to #ShowYourStripes on Rare Disease Day.

We are looking for volunteers to share a photo of themselves wearing a striped shirt, neckerchief, scarf or hat. Be bold! Add a quote that finishes this sentence: "I dream about APBD research that ..."

The goal is to increase awareness of APBD and engage the entire rare disease community.

Patients, family members, and friends are encouraged to participate!

If you are willing to take a photo to #ShowYourStripes, please email Molly at
Congratulations from
Disorder: The Rare Disease Film Festival 2020
We are honored to have "Life Through a Lens" selected through the early notification process to participate in this year’s Rare Disease Film Festival to take place on May 17th and 18th in New York City.

“Life Through a Lens” follows the journey of photographer Robert Zuckerman, an APBD patient, as he searches for and finds his rare disease diagnosis, and then how he has chosen to face his diagnosis and live life to the fullest. As the film captures, Robert empowers those living with the challenges, physical and otherwise, brought on by APBD and all debilitating diseases. His ability to harness optimism and possibility in life is inspiring and revelatory.

Sponsors include Sanofi Genzyme, Ultragenyx, and other companies and organizations focused on rare diseases.

Click here to view the film's trailer.
AmazonSmile – You shop. Amazon gives. 
Donate to APBD Research Foundation with every purchase on AmazonSmile by going to to shop. You'll have the same great prices and shopping experience as Amazon. 

Please search for APBD to find the APBD Research Foundation in Brooklyn, NY. (Typing in APBDRF will not yield any results.)

Thanks for your support!
Connect with us
APBD Research Foundation | | | Phone: 646.580.5610