Dear Gabriel,
It is my hope that 2021 will bring not only an end to this devastating pandemic, but also real progress towards APBD and allied disease therapeutic development. Therapeutic development is based on sound, peer-reviewed, published research. This link will take you to an important, recently published article titled, “GYS1 or PPP1R3C deficiency rescues murine adult polyglucosan body disease.”
The article appears in the Annals of Clinical and Translational Neurology and is based on a study that was funded by the APBD Research Foundation and the National Institutes of Health. We have a lay language summary for you too.
Additionally, we are happy to introduce Erin Chown who joins our team as Rare Disease Research Coordinator. Erin presented at two Scientific Advisory Board meetings and is the lead author of the journal article I cited above.
A large portion of Erin’s responsibilities involves outreach to researchers, clinicians, and other stakeholders in order to create connections and collaborative relationships between those different groups, and also with the APBD Research Foundation leadership team.
Our overall goal is to navigate the translation of preclinical research into treatments and cures for the APBD and allied disease community.
We cannot do this alone. Please join our upcoming event scheduled for March 2, 2021, ROOTS: Jewish Genes and Cuisine. This event promises to be a fun and tasty opportunity to show your support!
We look forward to seeing you on Zoom in March!
All the best,
Jeff Levenson
Co-President
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ROOTS: Jewish Genes and Cuisine
Join us on Tuesday, March 2nd at 7:30 pm ET (4:30 pm PT) for a special virtual event hosted by Ali Rosen, TV show host of Potluck with Ali.
The event will also feature Karen Grinzaid, Executive Director of JScreen Genetic Screening Program, as well as a special cooking demonstration by renowned chef and Jewish food expert Jeffrey Yoskowitz, author of The Gefilte Manifesto, who will share tales of the history of Ashkenazi cuisine while making a delicious dish with us.
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New Research Paves the Way for Therapeutics for APBD
Adult Polyglucosan Body Disease (APBD) is one of 7,000 rare diseases in the U.S. There are no effective treatments for the crippling neurodegenerative disorder. That may change with the publication of a study that identifies two key proteins in the body which, when blocked or reduced, may actually prevent the disease from occurring.
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