Campaign is not accepting payments at this time

Campaign is not accepting donations at this time

Roots: Jewish Genes and Cuisine

$111,815 raised of $100,000 goal
112% Complete
EVENT TIME iCal - Outlook - Google

Tue, March 02, 2021
7:30 PM - 8:30 PM ET

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 
Event Lineup

  • 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). 

 

 

 

 

 

 

About APBD

 

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 lydia@apbdrf.org.

 

Thank You to Our Sponsors!

 

$111,815 raised of $100,000 goal
112% Complete
EVENT TIME iCal - Outlook - Google

Tue, March 02, 2021
7:30 PM - 8:30 PM ET

Admission


$36 Regular Admission
$100 Donation
  • Includes Admission for 2
Read more
$180 Donation
  • Includes Admission for 4
Read more
$250 Donation
  • Includes Admission for 6
  • Receive a signed copy of The Gefilte Manifesto 
Read more
$360 Donation
  • Includes Admission for 8
  • Receive a signed copy of The Gefilte Manifesto 
Read more
$500 Donation
  • Includes Admission for 10
  • Receive a signed copy of The Gefilte Manifesto 
Read more
$1,000 Donation
  • Includes Admission for 25
  • Receive a signed copy of The Gefilte Manifesto 
Read more
$2,500 Donation
  • Includes Admission for 50
  • Receive a signed copy of The Gefilte Manifesto 
Read more
$5,000 Donation
  • Includes Admission for 100
  • Receive a signed copy of The Gefilte Manifesto 
Read more

Raffle Prizes


The Gefilte Manifesto

The founders of the world-famous Gefilteria revitalize beloved old-world foods with ingenious new approaches in their debut cookbook.

Liz Alpern and Jeffrey Yoskowitz are on a mission to reclaim and revolutionize Ashkenazi cuisine. Combining the inventive spirit of a new generation and respect for their culinary tradition, they present more than a hundred recipes pulled deep from the kitchens of Eastern Europe and the diaspora community of North America. Their recipes highlight the best of Ashkenazi home and storefront cuisine, tapping into the enduring Jewish values of resourcefulness and seasonality.

Drawing inspiration from aromatic Jewish bakeries (Classic Challah with a Marble Rye Twist, Seeded Honey Rye Pull-Apart Rolls), neighborhood delis (Home-Cured Corned Beef and Pastrami, Rustic Matzo Balls, and Old World Stuffed Gefilte Fish), old-fashioned pickle shops (Crisp Garlic Dilly Beans, Ashkenazi Kimchi), and, of course, their own childhood kitchens, Yoskowitz and Alpern rediscover old-world food traditions, helping you bring simple and comforting recipes into your home.

Dishes like Spiced Blueberry Soup, Kasha Varnishkes with Brussels Sprouts, and Sweet Lokshen Kugel with Plums celebrate flavors passed down from generation to generation in recipes reimagined for the contemporary kitchen. Other recipes take a playful approach to the Old World, like Fried Sour Pickles with Garlic Aioli and Sour Dill Martinis.

The Gefilte Manifesto is more than a cookbook. It’s a call to action, a reclamation of time-honored techniques and ingredients, from the mind-blowingly easy Classic Sour Dill Pickles to the Crispy Honey-Glazed Chicken with Tsimmes. Make a stand. Cook the Manifesto. The results are radically delicious.

Read more
Millennial Kosher

Chanie Apfelbaum, creator of world-renowned kosher food blog Busy In Brooklyn, makes her cookbook debut with a collection of modern, cultural, trendy, and bold dishes that reflect her passion for reinventing traditional foods with a Millennial vibe.
Millennial Kosher features:
-Over 150 innovative recipes for everyday and holiday meals
-Beautiful color photos for every dish
-Meatless Meals section includes dairy-free and vegetarian options
-Guide to kosher meat cookery
-Comprehensive tools and ingredient list

The millennial kosher kitchen is one in which food is reinvented and reimagined in new and exciting ways. It includes ingredients that are healthier, fresher, and more vibrant than ever before. Yesterday's margarine is today's coconut oil, bone broth is the new chicken soup, and the onion soup mix of our youth is replaced with umami-rich porcini mushroom powder.

Today, kosher food is spicier and bolder than the food we grew up eating. There's an emphasis on fresh and seasonal ingredients, less processed foods, and healthier nondairy alternatives. Modern kosher food reinterprets and reinvents tradition, while still staying true to our heritage. It's food that's influenced by cultural cuisine and not limited to, but inspired by, kosher guidelines. There is still a place for the kosher comfort foods of our youth, and for that there are hundreds of cookbooks. But for now, it's time for Millennial Kosher.

Read more
Bring It!: Tried and True Recipes

Bring It! is the ultimate source for potluck, picnic, or dinner party-worthy dishes that combine simple prep with big taste!

The word "potluck" may inspire memories of church dinners and mystery covered dishes. But today's potlucks are essentially outsourced dinner parties, which make gathering around a shared table a cinch. Inside Bring It!, you will find dozens of impressive-looking recipes that come together easily, and are perfect for carrying to any occasion.

Author Ali Rosen has put a long career in the food world to use, drawing on chef and restaurant secrets for easy dishes that will have friends begging for the recipe. Must-have dishes include:

· Pimento Cheese and Crab Dip

· Snap Pea Salad with Parmesan and Bacon

· Pistachio and Anchovy Pasta

· Short Ribs with Quick Pickled Shallots

· S'mores Bars

Each recipe includes a note called "How to Bring It," for make-ahead, reheating, and transport instructions. Flavors are designed for maximum impact, but won't take hours to cook, or require special ingredients. Have dinner with the neighbors, sit down to a picnic in the park, or bring a dish to the school luncheon. They come together easily, hold well, and travel beautifully. They'll have you rethinking the potluck.

Read more
Matzoh Ball Gumbo: Culinary Tales

From the colonial era to the present, Marcie Cohen Ferris examines the expressive power of food throughout southern Jewish history. She demonstrates with delight and detail how southern Jews reinvented culinary traditions as they adapted to the customs, landscape, and racial codes of the American South. Richly illustrated, this culinary tour of the historic Jewish South is an evocative mixture of history and foodways, including more than thirty recipes to try at home.

Read more
Let's Get Rolling

As you leaf through this book, you will soon become aware that what you have is no ordinary cookbook. It's a vegetarian cookbook. It has Alma's beautiful watercolor illustrations. And it's designed for people who get around on wheels as well as others with mobility challenges. But it's more than any of these or all of these combined. It's an introduction to a way of living, especially a way of living that evolves as physical abilities change.

When she was first diagnosed with the rare, progressive Adult Polyglucosan Body Disease (APBD), Alma started a blog. In it, she shared her experiences with the world. In a post dated February 28, 2015, Alma wrote: "Yes, I have this lousy disease; yes, I have limitations; yes, I am loved; and yes, there are possibilities." This book is a chronicle of possibilities.Alma had long ago mastered the art of creating simple, uncomplicated dishes that were, at the same time, elegant and delicious. She knew how to use leftovers to make even more interesting meals. Most importantly, she knew how to capitalize on the flavors of fresh foods - eggplants, figs, peaches, avocados. When she realized that she would be cooking from a wheelchair, Alma rearranged her kitchen, having doors removed where necessary, bringing utensils within reach and organizing them functionally, and, in the process, creating a work space that was both serviceable and attractive. With this creative rearrangement, she could continue to make the food that nourished her and that she enjoyed sharing with her friends. She modified recipes and created new ones that were easy to prepare and didn't require unusual ingredients.

Read more

Donate


Can't join the event? You can still support this cause…
Other