ROOTS brings APBD (Adult Polyglucosan Body Disease) and allied disease supporters together to celebrate the strength of the community and to raise funds to improve the lives of people living with APBD and their families. Through storytelling and education, virtual event attendees will learn about Jewish ancestry and cooking while celebrating the Weiss brothers’ vision and commitment to the APBD Research Foundation.
March 2, 2021 7:30 pm ET | 4:30pm PT
- Hosted by Ali Rosen, Emmy-award nominated TV host and author
- Honoree Award presented to Dr. Jesse Cedarbaum
- Discussion on Jewish genes by Karen Grinzaid, Executive Director of JScreen
- Cooking Demonstration by renowned chef/author Jeffrey Yoskowitz of the Gefilteria with special guest chef Ruth Levine
- 8:30 pm ET | 5:30pm PT – After Party Q&A
Funds raised at ROOTS will support the mission of the APBD Research Foundation to:
- Support scientific research into the treatment and cure for APBD
- Increase awareness of APBD among at-risk populations and health professionals
- Provide support and resources to patients and families suffering from the devastating effects of this neurodegenerative disease
About Our Honoree
Dr. Jesse Cedarbaum is Professor, Adjunct of Neurology and Psychiatry at Yale Medical School and Founder and Head of Coeruleus Clinical Sciences, LLC. Dr. Cedarbaum currently serves on the Foundation’s Pharmaceutical Development Committee, where he is helping to advance research on APBD that will lead to future clinical trials. A neurologist/clinical trialist with sub-specialty in Movement Disorders, he has spent the majority of his career as an executive in the pharmaceutical industry, leading teams in the areas of neurodegenerative, neuropsychiatric and retinal disorders at Regeneron, Elan, Cytokinetics and Bristol-Myers Squibb. Most recently he led a team at Biogen that advanced 3 new compounds into the clinic for potential treatment of Parkinson’s disease.
About Jewish Genetics
There are many rare and ultra-rare diseases stemming from – or rooted in – genetic defects for which patients and medical researchers work tirelessly to find cures. Success for one disease typically unlocks treatments for whole families of related disorders. Individuals of Ashkenazi Jewish (Eastern European) descent are at an increased risk for certain genetic disorders, including cystic fibrosis, Canavan disease, Tay-Sachs disease, Gaucher disease and APBD (Adult Polyglucosan Body Disease), among others. In fact, it is estimated that one in every four individuals of Ashkenazi Jewish descent is a carrier for at least one of these genetic conditions.
About Jewish Cooking
ROOTS will feature an engaging discussion on Jewish ancestry and a special cooking demonstration of Jewish-inspired Cocktails and Noshes by renowned chef and Jewish food expert Jeffrey Yoskowitz. A Brooklyn-based food entrepreneur, creative producer, and thought leader at the intersection of food, culture and business, Jeffrey is the co-founder of The Gefilteria (www.gefilteria.com) and co-author of The Gefilte Manifesto, a comprehensive guide to contemporary Jewish cooking.
Cooking alongside Jeffrey will be chef and restaurateur Ruth Levine. Ruth is the former chef and owner of Bistro 185 in Cleveland, Ohio. Ruth's husband Marc suffers from APBD.
About Our Event Host
Ali Rosen is the Emmy and James Beard Award nominated host of Potluck with Ali Rosen on NYC Life. She is the author of the cookbook Bring It! and the upcoming Modern Freezer Meals (Summer 2021). She has been featured on The Today Show, Dr Oz, and NPR's All Things Considered and has written for publications including The Washington Post, Bon Appetit and New York Magazine. She was a Forbes 30 Under 30 and Thrillist said Ali had one of the coolest jobs in food (she agrees).
Adult Polyglucosan Body Disease (APBD) is a rare inherited disorder of metabolism in which a missing or folded enzyme causes toxic substances to build up in the body. One segment of the general population appears to be at significantly greater risk compared to other segments --individuals of Ashkenazi Jewish (AJ) ancestry. In that group, the carrier rate is 1:48 for at least one of the two most common genetic mutations that cause APBD.
Patients begin experiencing symptoms between the ages of 35 and 60, when they’re in the prime of their lives. This handy mnemonic device lists some of the early signs:
- Adult onset. Ashkenazi Jewish ancestry is frequently, but not always, present.
- Peripheral neuropathy (tingling or numbness in hands or feet)
- Bladder dysfunction
- Decreased energy
As the disease progresses, patients may lose the ability to walk, stand, stay continent, stay awake, perform at work, and socialize. While the speed of progression of the disease varies from patient to patient, it eventually robs them of nearly every aspect of their independence.
The exact incidence of APBD is unknown because many patients are often misdiagnosed as having ALS or Multiple Sclerosis or other progressively degenerative ailments. As a result, their lives are filled with inappropriate medications, useless surgeries, and inexplicable decline.
About the APBD Research Foundation
We are the only US nonprofit supporting people with APBD. As the trusted APBD hub for medical providers, healthcare industry & APBD families, we are the source for patient information and support through ongoing phone contact, website, social media, e-newsletters, and patient and family Chat groups.
Since its founding in 2005, the APBD Research Foundation has funded more than $1 million in research to find treatments and a cure for APBD and allied diseases, established the APBD Patient Registry (CAP) in collaboration with Columbia University, and supported the research that uncovered the 2nd most common genetic mutation that causes APBD in one third of all APBD patients.
A short video highlighting the Weiss brothers of Brooklyn, NY (originally from Zakarpatia, Ukraine) will be shown at the event. The Foundation was founded in 2005 by Gregory, Michael, and Emil Weiss when Gregory, after being treated for years for MS, neuropathy, and prostate/bladder issues, was finally correctly diagnosed with APBD.
About Sponsorships and Community Partners
Sponsors help us offset the cost of the event so that funds raised will go straight to important research and patient support. Community Partners help spread the word about the event through email and social media. For more information about sponsorship and Community Partnership opportunities, please contact Lydia Dorsky at firstname.lastname@example.org.
Thank You to Our Sponsors!