APBD in the media

January 2018
Hadassah Magazine
Hadassah on the cutting edge of Rare Disease Research



August 2017
Patient Ronson Akina was featured in the nightly news on Hawaiian TV station KGMB. As a result of the coverage of his symptoms, the foundation was flooded with requests to obtain the APBD in-home saliva test kit.

July 2017
Mishpacha’s Family First magazine on Orphan Diseases
Jewish Orphan Diseases

Family First Magazine 20170718 Orphan Deseases

© Mishpacha Magazine Inc. All rights reserved
Reprinted with permission of Mishpacha Magazine

May 2017

Jewish Exponent
Riders Clock 12 Miles to Reach a $100,000 Goal


April 2017

Penn Medicine Orphan Disease Center Newsletter

Orphan Disease Center Newsletter

December 2016

Rare Revolution Magazine


August 2016

Aug 19, 2016 Forward’s Genetics edition APBD ad on page 25


August 2016

Univ. of Pennsylvania Orphan Disease Center – pilot grants


June 2016

The Gene Scene
A blog for the community, from the leadership and friends of the Program for Jewish Genetic Health


June 2016
Subject: Pepticom 22/06/16

Dear Friend of Pepticom,

Pepticom would like to thank the President of the United States, Barack Obama, Secretary of State, John Kerry, Secretary of Commerce Penny Pritzker, US Ambassador Daniel Shapiro, Commercial Counselor Greg Briscoe and Commercial Specialist Sigal Mendelovich for hosting and leading the Israeli delegation to the SelectUSA Investment Summit. The summit helped Pepticom’s efforts to enter the US market, with multiple contacts. Thank you!

Best regards,
The Pepticom team.


May 2016:

Local 600 International Cinematographers Guild newsletter
APBD and “Life Through a Lens” at the L.A. Reel Film Festival was in the Local 600 International Cinematographers Guild newsletter this week


May 2016:

Jewish Exponent
Bike Riding Team to Raise Awareness of and Funds for APBD Research


April 2016:


NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement

Big Pharma thinks of Natural History Study Registries as a game changer.


April 2016:

Jewish Georgian

Fighting A Rare Disease


(Page 5, right hand column)

April 2016:

Town and Village Synagogue

APBD in the Town and Village Synagogue monthly newsletter



February 2016:

Our effort towards a potential cure for APBD have been covered by Yedioth Ahronoth on Sunday. This effort helps us raise money to bring LTKE to the clinic as well as assist in generating public interest in APBD.

We want to thank Mr. Ze’ev Guttman, who brought our efforts to the attention of Yedioth and has helped us raise public attention to the project during recent months!

Yedioth Ahronoth

January 2016:


So rare it is hard to find a cure for disease, APBD Revealed

http://m.maariv.co.il/lifestyle/health/Article-521131 (hebrew)
Orly – Mariv (English translation)

November 2015:

Times of Israel

No cure for rare numbing disease that plagues Jews


November 2015:


Rare numbing disease that plagues Jews has diagnosis, but no cure


November 2015:

Ottawa Jewish Bulletin

Rare numbing disease that plagues Jews has diagnosis, but no cure


November 2015:

Jewish Telegraphic Agency

Rare numbing disease that plagues Jews has diagnosis, but no cure


November 2015:

Washington Jewish Week

APBD: It’s yet another rare disease affecting Ashkenazi Jews


October 2015:

The Jewish Center of the Hamptons

Rabbi Levenson’s reflection on his recent trip to Israel


October 2015:

Grape Vine

Possible Cure for APBD: A Jewish Genetic Disease Frequently Misdiagnosed


September 2015:

Jerusalem On Line

Drug initiative for rare disorder affecting Ashkenazi community needs prospective candidates for study


September 2015:

Jewish Business News

Drug Initiative For Rare Disorder Affecting Ashkenazi Community Needs Prospective Candidates For Study


August 2015:

The Jewish Georgian

An open letter to the Jewish community
Article – page 5/ Ad – page 26


August 2015:

Cleveland Jewish News

Pepper Pike man aims to teach about rare Ashkenazi illness


July 2015:

DNA Science

Midsummer Updates at DNA Science


July 2015:

Miami Herald

Portraits in Words and Pictures

Robert Zuckerman  APBD patient in the news

April 2015:

American Academy of Neurology

Dr. Orhan Akman presented new Second APBD mutation discovery at American Association Neurology meeting April 2015 Washington, D.C.

Second APBD mutation discovery

February 2015:

Rare Disease Report

APBD in the Rare Disease Report

They have a Rare Disease Resource Guide that includes very good information on rare diseases; with topics such as Diagnosis, Treatment, Clinical Trials and Registries, and Patient Advocacy Groups (which does include APBDRF).The Guide can be found at http://www.raredr.com/resource-guide/.

In addition, the Guide includes a number of links to other sites. One of the sites mentioned is http://findzebra.compute.dtu.dk/. It allows you to enter your symptoms and search for a disease.



January 2015:

Ricki Lewis- independent blog post

Adult Polyglucosan Body Disease (APBD): A Diagnostic Challenge


Argonaut Online

Star power for a purpose



Adult Polyglucosan Body Disease (APBD): A Diagnostic Challenge



August 2014:

August 22, 2014 neuropathy association newsletter

Neuropathy: Getting from an “Idiopathic Neuropathy” Diagnosis to an “Adult Polyglucosan Body Disease” Diagnosis


August 11, 2014 Jewish Daily Forward


Genetic Nerve Disease Puts Photographer on Other Side of the Lens




July 2014:

THE JEWISH GEORGIAN July-August 2014 – Page 13 article / page 32 ad

Adult polyglucosan body disease: what people of Ashkenazi Jewish descent need to know

Download Issue Article – pg. 13 Ad – pg. 32




February 2014:


The Benefits of ‘Kindsight’

Read Article: