E-Newsletter

We look forward to bringing you promising news every month as we move closer to translating our 15 years of basic science research into meaningful therapies.
 
Last month, Dr. Edwin Kolodny — the physician who has nurtured our Foundation since Day 1 — and his wife, Dr. Roz Kolodny, were honored and celebrated for their community impact by Berkshire Hills Hadassah.

During the virtual event that attracted attendees from all around the globe, Dr. Ed Kolodny shared his inspiring life's work on two genetic diseases — Tay-Sachs disease and APBD — which impact the Jewish community. Dr. Roz Kolodny shared heartwarming stories about her decades-long relationship with Hadassah. The event also raised over $15,000 which will be used to advance APBD research at Hadassah University Medical Center in Jerusalem, Israel. 

There is more good news highlighted in this newsletter. Please read on.
 
To our doctors, our researchers, our patients, and our families, we are thankful to each and every one of you for your role in our work to find a cure for APBD. 
 
Our hearts are filled with hope!

All best wishes,

Emil Weiss, Co-President
Jeff Levenson, Co-President
ANNOUNCING THE CAREGIVER/FAMILY CHAT GROUP

If APBD touches your life through a family member or loved one, whether you are a hands-on caregiver or within the circle of emotional support, we hear you. APBD has a profound impact on you.

We invite you to come to our “Caregiver/Family Chat Group” on the second Thursday of each month, beginning November 10, 2020.
FOUNDATION RECEIVES PATIENT AND FAMILY SUPPORT GRANT FROM THE SOCIETY FOR THE STUDY OF INBORN ERRORS OF METABOLISM

The APBD Research Foundation has been awarded €4,500 ($5,270) by Europe-based Society for the Study of Inborn Errors of Metabolism. The award will be used to support patients and families impacted by APBD. 

The SSIEM is a nonprofit organization committed to promoting interdisciplinary collaboration to advance the knowledge of inherited metabolic diseases. 
APBD DEBUTS ON THE DISORDER CHANNEL

This November, our “We Are APBD” explainer video and our documentary, “Life Through a Lens,” will make their debut on The Disorder Channel. Our informative APBD videos will be accessible by millions of people around the world who have Amazon Fire and Roku subscriptions, bringing much needed public awareness and understanding to this little known -- and often misdiagnosed -- disease.

DID YOU KNOW WE'RE ON YOUTUBE?

The Foundation's YouTube channel has thousands of views. Our varied video collection includes personal narratives and scientific research discussions. The information goes from the basics, with video animation explaining APBD, all the way through technical medical information for researchers and physicians. Be sure to subscribe to our channel, so you'll know when new videos are posted.

PHOTO OF THE MONTH
We started October by representing the APBD community in a two-day virtual conference hosted by the National Organization for Rare Disorders. The Rare Diseases and Orphan Products Breakthrough Summit highlighted the current climate of scientific innovation that allows us to envision life-altering and curative treatments.