Andrew in New York
Current Age: 50 Onset of Symptoms: 38 Age at Diagnosis: 44 "It started as a sudden onset of many symptoms at once, I immediately saw my physician, who sent me to a neurologist. I was given a diagnosis of [Read More]
Recently Published “Guaiacol as a drug candidate for treating adult polyglucosan body disease”
Or Kakhlon and colleagues screened FDA-approved compounds for those able to reduce GYS activity and polyglucosan accumulation in APBD fibroblasts. Guaiacol emerged as a potential candidate from this screen and improved grip strength and increased lifespan in murine APBD models. [Read More]
2018 Million Dollar Ride Ride
The APBD Community said, "Let's Roll!" to the Million Dollar Bike Ride for rare disease research. Some of the 36 members of our "Tour de Friends" team rode bikes on the official course in Philadelphia, and some rode virtually in [Read More]
Jewish Exponent: Film Series Pick Highlights Rare Disease
Robert Zuckerman during filming of Life Through a Lens. | Photo provided Robert Zuckerman has photographed portraits of iconic stars the world over, from David Bowie to Arnold Schwarzenegger. His prolific career slowed — but did not stop [Read More]
Gregory Weiss (1947 – 2018)
Gregory Weiss (1947 - 2018) It is with very deep regret that we inform you of the passing today (June 25, 2018) of Gregory Weiss, Founder and President of APBDRF. Make a Memorial Donation I met Gregory thirteen [Read More]
Life Through a Lens – UK premiere screening
Dr. Wyatt Yue will introduce the @APBDRF documentary “Life Through a Lens“ at our UK premiere screening at the Oxford International Film Festival on Sunday, May 13th 6pm http://www.oxiff.com/life-through-a-lens
New Jersey Jewish News: ‘Hollywood just dropped me’
Show biz photographer fights rare genetic disease Despite his rare genetic disease, Robert Zuckerman still delights in his vocation, photography. http://njjewishnews.com/article/37996/hollywood-just-dropped-me#.Wtf5ZiIpDYU
Jewish Link of New Jersey: Documentary at JCC ReelAbilities Film Festival to Shed Light on Jewish Genetic Disorder
https://www.jewishlinknj.com/monthly-sections/health-link-new/24323-documentary-at-jcc-reelabilities-film-festival-to-shed-light-on-jewish-genetic-disorder
Global Genes – Medical Student Pairing
APBDRF Board Member David Epstein has been paired with a 3rd year medical student from the University of Maryland. In a program sponsored by Global Genes®, medical students are paired with rare disease patients in an effort to build the [Read More]
Join over 500 cyclists and volunteers to bike ride in support of Rare Disease Research
Thank you for your interest in joining the APBD Tour De Friends Team in the University of Pennsylvania’s Million Dollar Bike Ride on May 20 to show your support for rare disease research. There are 7,000 rare diseases & disorders [Read More]
We need your input to target research
Help us, help you! Dear APBD Patient (with confirmed diagnosis): The Foundation can better target research if we hear from the wide APBD community. Recently, we have heard from some of you on APBD diets, possible new health problems, misdiagnosis [Read More]
The Benefits of ‘Kindsight’
THE JEWISH DAILY FORWARD The Benefits of ‘Kindsight’ Read Article: http://blogs.forward.com/the-arty-semite/192725/the-benefits-of-kindsight/#ixzz33fwCE7fM
Hadassah Magazine: Hadassah on the cutting edge of Rare Disease Research
http://www.hadassahmagazine.org/2018/01/29/celebrating-100th-birthdays/
We need you to ride with us for APBD research on May 20th in Philidelphia
Greetings from the ODC! Registration for the 2018 5th Annual Million Dollar Bike Ride is now open! Please follow this link to register for the ride, which takes place on Sunday, May 20, 2018. Feel free to share the above [Read More]