March Newsletter
We hope you're having a great start to spring!

On behalf of the APBD Research Foundation, I would like to thank you for making ROOTS: Jewish Genes and Cuisine -- our first virtual awareness and fundraising event -- a roaring success. Each of you -- patient, family member, friend, health professional, sponsor -- made this evening special. The virtual event brought together more than 200 APBD and allied disease supporters for a wonderful evening of entertaining and illuminating discussion ... and we raised over $111,000 to bring help and hope to people living with APBD and their families. Click here to view video clips and read event highlights...

In our monthly newsletter below, you will read about the strides we're making to advance APBD research and raise the public profile of APBD, as well as learn about upcoming programs to bring our community together. The newsletter also debuts a column about our event sponsors, starting with Joyva.

Wishing you well,

Lydia Dorsky
APBD Research Foundation Board Member
ROOTS Event Committee Chair
RESEARCH UPDATE: UT Southwestern Scientist Receives 2020 MDBR Grant to Develop a Novel Therapeutic Strategy for APBD

Adult Polyglucosan Body Disease (APBD) researcher Felix Nitschke, PhD at UT Southwestern Medical Center, recently received a $121,268 grant to advance rare disease research from the University of Pennsylvania’s Million Dollar Bike Ride (MDBR) program.

For the fifth consecutive year, the APBD Research Foundation partnered with the University of Pennsylvania’s Orphan Disease Center to participate in the Million Dollar Bike Ride program. This program provides a one-year pilot grant to support research related to a rare disease represented in the Million Dollar Bike Ride. 


From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals in an effort to build community and collaboration. Our offerings in April include:

Caregiver/ Family Chat
April 8, 2021, 8:30pm ET/5:30pm PT
Do you have a loved one who is battling APBD? Join us on April 8 and the second Thursday of every month to share and create a supportive community of caregivers and friends. To participate, email us at

Patient Chat
April 28, 2021, 8pm ET/5pm PT
Do you have APBD? Join us on April 28 and the fourth Wednesday of every month to connect with and learn from patients in our community. To participate, email us at
FEATURED VIDEO: "The Story of the APBD Research Foundation"

Our featured video, "The Story of the APBD Research Foundation," debuted earlier this month at our successful ROOTS event. Please take a moment to enjoy how it reflects the Foundation's past, present, and future. It is a power-packed video weaving the story of APBD from the perspective of the patients, caregivers, friends, researchers, and clinicians in our community. Together, we are working towards a future with treatments -- and a cure -- for APBD!

We take this opportunity to express our thanks to David Hillenbrand for his creativity and production skills, and for making this video possible.


With Passover starting this week, we are pleased to spotlight Joyva, one of our top Platinum Parsnip sponsors from the ROOTS event held earlier this month.

Joyva, a fourth-generation family business, is known for many Passover favorites like The Original Jelly Rings, Classic Marshmallow Twists, and Sesame Crunch Candies. This beloved Brooklyn specialty foods company has been selling Tahini, Halvah, and other delicious confections since 1907, when Nathan Radutzky came to America from Kiev with a recipe for Halvah and a dream to share it. 

It’s been over 100 years since Nathan sold his first piece of Halvah from a pushcart on the Lower East Side of New York. Today, Joyva continues to handcraft this old-world sesame treat with the original family recipe. A documentary is currently underway that will share this impressive story. 

“We continue to work every day to honor the traditions of Nathan and his four sons while also bringing this brand into the future. Passover has always been a special part of the Joyva story and we’re delighted that we continue to be a part of many family seders across the country” said Richard Radutzky, President of Joyva.

The filmmakers are looking for Joyva fans for whom Passover is not the same without Joyva's treats to film themselves with their cell phones answering two quick questions during the Passover holiday. In exchange for participation, Joyva will send a free and delicious goodie bag of Joyva treats for you to enjoy this Passover season!

If you're interested, please fill out this brief form, and the filmmakers will follow up with you!
Thank you to all of our sponsors of ROOTS: Jewish Genes and Cuisine.