December E-Newsletter

2020 involved surprises we never could have anticipated. Nevertheless, our Foundation’s leaders moved the APBD fight forward in many wonderful and important ways.

o  When the organizers of our key research fundraiser, the Million Dollar Bike Ride for rare disease research, announced the ride was going virtual, we figured out how to recruit our biggest team of riders ever and raise the most money ever.   

o  We applied for and received 1 of 30 Rare As One grants from the Chan Zuckerberg Initiative. We knew selection would move us into a bigger league, and we were right! We have augmented our Foundation’s internal strengths as well as our network of external collaborations.

o  We learned about a patient and family support award being sponsored by the Society for the Study of Inborn Errors of Metabolism. We applied and were one of three selectees! As a result, we began offering an array of virtual educational opportunities that address the specific interests of our patients.

o  With international travel not happening but a new tool called Zoom introduced to us, we facilitated the Virtual APBD Biomarkers Workshop. Exchanges among researchers and patient advocates about potential biomarkers were vigorous and enlightening.

o  We launched a Caregiver/Family Chat program to complement our ongoing Patient Chat program. Join us in January to start the new year with new support!

All of this positions us well for 2021, when we plan to bring our community of researchers, clinicians, patients, and support providers together for an international convening.

May 2021 bring strength, hope, and joy to you and your loved ones,

Harriet Saxe
Board Member

P.S. Please take a moment to save the date, March 2, 2021, for our upcoming virtual event, ROOTS: Jewish Genes and Cuisine. You’ll eat it up! Guaranteed!
Top Articles of the Year

This year we have developed articles and resources with the help of contributing writers -- health care professionals and patient advocates in the field -- aimed at helping you better understand APBD and learn about the work being done in the field. The most-read articles of 2020 inspired hope, showed dedication, and shared the toll of APBD.

2020 Year-End Giving

Contributions by supporters like you have helped us fund more than $1 million in research, build an APBD patient registry, uncover the second most common genetic mutation that causes APBD, establish a simple diagnostic saliva test, and so much more!

Have you subscribed to our YouTube channel?

With thousands of views to date, our video collection includes everything from personal narratives to details about scientific research. It appeals to newbies, who just want the basics, as well as to researchers and physicians, who seek technical insights. By subscribing to our channel, you'll know when new videos are posted. We currently have 56 subscribers. Help us get to 100 subscribers by the end of 2020!

Save the Date!