September E-Newsletter

September has been an action-packed month with back-to-back conferences! The virtual format has given us the flexibility to do so much more. From attending events, to exhibiting, and guest speaking, we're getting the word out about APBD and the research breakthroughs we're working on. We're representing you--and the broader APBD community--at a range of virtual Conferences, including:
World Orphan Drug Congress USA - Aug. 24-27, 2020

We're also using this time and opportunity to reach out to our peers and supporters, glean best practices from like-minded organizations, and make way for collaborative programs. In spite of the challenges this season, we are pressing forward -- with your support -- to find treatments and a cure for APBD.

All best wishes,
Emil Weiss, Co-President
and 
Jeff Levenson, Co-President

On June 22, 2020, the APBD Research Foundation hosted its first Biomarker Workshop. We facilitated a vigorous -- and successful -- exchange among researchers and patient advocates regarding APBD biomarkers. Biomarkers are characteristics of the body that we can measure. To understand APBD better, we need breakthroughs in identifying diagnostic, pharmacologic, and prognostic indicators. The workshop brought together well-known researchers within the APBD community as well as experts from other fields to share their expertise and collaborate on the search for effective APBD biomarkers.  


Like Sheri -- a patient in our community -- many of us find ourselves shopping online more than ever before. This is great news for APBD research and our work if you use AmazonSmile. Every time you shop on Amazon use this link and 0.5% of your purchases will be donated to the Foundation... it's that easy (the pricing and options are all the same)! Since joining the AmazonSmile program, the Foundation has received just about $2,000 to advance APBD research. Sheri recently shared that she loves using AmazonSmile to donate to the Foundation. You can too!