APBD in the media

December 2016

Rare Revolution Magazine

http://edition.pagesuite.com/html5/reader/production/default.aspx?pubname=&edid=22d392d7-db28-4f91-9d76-707b9370224b


August 2016

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

apbd-genetics


August 2016

Univ. of Pennsylvania Orphan Disease Center – pilot grants

https://news.med.virginia.edu/deansoffice/uvasomrestriction/public/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

https://jewishgenetichealth.wordpress.com/


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.

pepticom


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

http://apbdrf.org/local600.html


May 2016:

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

http://jewishexponent.com/headlines/2016/05/bike-riding-team-to-raise-awareness-of-and-funds-for-apbd-research


April 2016:

NORD

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.

https://rarediseases.org/nord-announces-20-rare-disease-patient-groups-selected-to-develop-natural-history-studies-as-part-of-fda-cooperative-agreement/


April 2016:

Jewish Georgian

Fighting A Rare Disease

http://jewishgeorgian.com/JGAMarApr16.pdf

(Page 5, right hand column)


April 2016:

Town and Village Synagogue

APBD in the Town and Village Synagogue monthly newsletter

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:

Mariv

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

http://www.timesofisrael.com/no-cure-for-rare-numbing-disease-that-plagues-jews/


November 2015:

jewishjournal.com

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

http://www.jewishjournal.com/health/article/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

http://www.ottawajewishbulletin.com/2015/11/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

http://www.jta.org/2015/11/19/life-religion/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

http://washingtonjewishweek.com/26653/apbd-its-yet-another-rare-disease-affecting-ashkenazi-jews/wjw-guides/health/ 


October 2015:

The Jewish Center of the Hamptons

Rabbi Levenson’s reflection on his recent trip to Israel

http://apbdrf.org/rabbi-levensons-reflection-on-his-recent-trip-to-israel


October 2015:

Grape Vine

Possible Cure for APBD: A Jewish Genetic Disease Frequently Misdiagnosed

https://www.grape-vine.com/ContentDetails.aspx?preview=true&Id=11986


September 2015:

Jerusalem On Line

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

http://www.jerusalemonline.com/news/world-news/the-jewish-world/drug-initiative-for-rare-disorder-affecting-ashkenazi-community-needs-prospective-candidat-16008


September 2015:

Jewish Business News

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

http://jewishbusinessnews.com/2015/09/20/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

http://jewishgeorgian.com/JGASeptOct15.pdf



August 2015:

Cleveland Jewish News

Pepper Pike man aims to teach about rare Ashkenazi illness

http://m.clevelandjewishnews.com/features/health/pepper-pike-man-aims-to-teach-about-rare-ashkenazi-illness/article_5d3c58f8-2590-11e5-a8ad-a76a66a3c06f.html?mode=jqm


July 2015:

DNA Science

Midsummer Updates at DNA Science

http://blogs.plos.org/dnascience/2015/07/30/midsummer-updates-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

http://blogs.plos.org/dnascience/2015/01/01/adult-polyglucosan-body-disease-apbd-diagnostic-challenge/

Argonaut Online

Star power for a purpose

http://argonautnews.com/star-power-for-a-purpose/

PLOS Blog

Adult Polyglucosan Body Disease (APBD): A Diagnostic Challenge

http://blogs.plos.org/dnascience/2015/01/01/adult-polyglucosan-body-disease-apbd-diagnostic-challenge/


 

November 2014:

jewishgenetics.org

A medical mystery: a guest blog post about adult polygucosan body disease

http://jewishgenetics.org/jewishgenetics.org/APBD

 


August 2014:

August 22, 2014 neuropathy association newsletter

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

http://www.neuropathy.org/site/News2?page=NewsArticle&id=8744&news_iv_ctrl=1101 

August 11, 2014 Jewish Daily Forward

 

Genetic Nerve Disease Puts Photographer on Other Side of the Lens

http://forward.com/articles/203717/genetic-nerve-disease-puts-photographer-on-other-s/?p=all#ixzz3QsLnqezq

 


 

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
http://jewishgeorgian.com/JGAJulyAug14.pdf 

 


 

 

February 2014:

THE JEWISH DAILY FORWARD

The Benefits of ‘Kindsight’

Read Article:
http://blogs.forward.com/the-arty-semite/192725/the-benefits-of-kindsight/#ixzz33fwCE7fM