Dear APBD Community:

I'm happy and honored to announce that four esteemed scientists, identified below and all from the APBDRF Scientific Advisory Board, have agreed to take time from their busy schedules to join the Penn Medicine Orphan Disease Center in reviewing APBD grant proposals. This past spring, 150 donors helped us raise $51,000 for UPenn's Million Dollar Bike Ride for rare disease research. UPenn matched the first $50,000 we raised, thereby making $101,000 available for APBD pilot research grants.

Edwin H. Kolodny, MD, FAAN, FACMG

Professor Emeritus, Department of Neurology

New York University School of Medicine

Marvin Natowicz, MD, PhD

Department of Neurology

Cleveland Clinic

Christopher J. Klein, MD

Department of Medical Genetics

Mayo Clinic

Brent Fogel, MD, PhD

David Geffen School of Medicine

University of California, Los Angeles

The APBD Research Foundation, after considerable discussion, including input from our patients who meet monthly via telephone, decided to encourage all investigations which would advance research of a treatment or cure.

With my profound thanks for all you have done and continue to do to support the APBD Research Foundation.

Best,

Gregory Weiss, President

APBD Research Foundation

Outreach and Education by MyJewishGeneticHealth.com

In July, MyJewishGeneticHealth.com completed and posted on its website an 11-minute lesson about APBD. This is the first lesson they have ever offered on an orphan disease. Dr. Heather Lau, from NYU Langone Medical Center, is the guest lecturer. Here's her presentation: https://www.youtube.com/watch?v=v-aliYrZBrE It's an outstanding educational piece. A short public service announcement (PSA), also created by MyJewishGeneticHealth.com, can be viewed here: https://www.youtube.com/watch?v=fseIgb2z1H4 .

Emmy Winner Michael Chiklis Hosting Installation of Photos by APBDRF Board Member Robert Zuckerman

You're invited!

On September 13, 2016, from 6:30 - 8:30 p.m., please join a cocktail reception celebrating the permanent installation of photographs by our own Robert Zuckerman www.robertzuckerman.com The installation represents Robert's forty years of dedication to and love of photography. Robert has served on the Board of Directors of the APBD Research Foundation since 2014.

The reception is being hosted by Emmy Award winning actor Michael Chiklis, star of "The Shield", "Gotham" and many more. "Life Through a Lens," the award winning short documentary film about Robert's life as an APBD patient will also be screened. Following the documentary, Dr. Jeffrey Levenson, Volunteer Advisor for the APBD Research Foundation will lead a Q&A and discussion.

This event will take place at GreensLedge Financial, 399 Park Avenue, 37th Floor, New York, New York.

Please feel free to share this invitation with clients, colleagues, friends and loved ones.

Late Breaking News

"Life Through a Lens" has been accepted as an Official Selection of the Williamsburg International Film Festival. WILLiFEST 2016 takes place in Williamsburg, Brooklyn in New York City on September 9th through 11th

AND MORE GREAT NEWS: The Catalina Film Festival has just accepted "Life Through a Lens" for this year's competition.

Bravo, Robert Zuckerman!

Save the Date:

September 13 - Reception honoring Robert Zuckerman at GreensLedge Investments, NYC

September 15 - AGSDUS (Association of Glycogen Storage Diseases US) annual meeting in Toronto, Canada. Antisense oligonucleotide (ASO) sequences discovered by Ionis Pharmaceuticals were injected into APBD mouse models generated by Dr. Orhan Akman and Lafora Disease mouse models generated by Dr. Berge Minassian. Dr. Minassian will present his findings. The goal is to use ASOs in periodic injections for APBD patients in order to decrease glycogen synthase, thus reducing the build-up of polyglucosan bodies, and thereby slowing the disease progression.

October 17/18 - NORD Rare Disease Summit in Washington, DC

November 6 - NYC Marathon. JoJo runs her 3rd marathon in support of APBD research, this year joined by her daughter, Chloe

November 15 - FasterCures Conference in NYC

December 5/6 - 12th annual APBD Scientific Advisory Board Meeting in NYC

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