JewishGen Discussion Group #JewishGen Rare genetic disease affecting Ashkenazi Jews #general

Linda Epstein

I am helping to get the word out about Adult Polyglucosan Body
Disease (APBD). Symptoms of APBD mimic other, better known diseases,
such as prostate cancer, dementia, ALS, Alzheimer's, Multiple
Sclerosis, Peripheral Neuropathy and Spinal Stenosis, and therefore
is often misdiagnosed.

APBD is a rare genetic disease that affects Ashkenazi Jews. It
generally begins to affect a patient's nervous system in their 40's
or 50's and progresses slowly. The symptoms include bladder problems,
numbness in the hands and feet, and increasing stiffness in the legs.

In 2005, Gregory Weiss, an APBD patient, founded the APBD Research
Foundation. The Foundation supports disease research and provides
assistance to APBD patients. Recently the Foundation has opened a
Patient Registry which will become critical when the researchers
initiate clinical trials to test potential treatments. In addition
to the registry, two new brochures have been developed that describe
the disease. 

The Foundation is also attempting to use genealogy in tracing the

For information on APBD and the Research Foundation, go to the
website at . Electronic copies of the brochures are
available on the site, along with information on research activities,
testing for the disease, the new Patient Registry, etc.

My thanks to the moderators for allowing this slightly off-topic
message to be posted.

Linda Epstein

[MODERATOR: This is posted here strictly for informational purposes,
and is not an invitation to begin a discussion thread.]

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