Letter to My Rabbi
I have a genetic disease known by its initials, APBD. It impacts me significantly and also an untold number of Ashkenazi Jews throughout the world. Misdiagnosis is the norm, so sufferers commonly spend years searching for a diagnosis – if they ever get one. At this time, there is no cure.
Most often people are told they have MS, ALS, prostate disease (men), and other ailments which have symptoms similar to APBD. Lives become medical disasters filled with decline, frustration; useless surgeries; and inappropriate medications.
I can hardly believe it: An unprecedented opportunity has arisen to move towards a cure!
An Israeli startup company will consider paying for and running a drug initiative for APBD – but only if the APBD Research Foundation can show them a patient registry with 200 APBD patients.
200 patients. Even though 1 out of 68 Ashkenazi Jews carries a genetic mutation that can lead to APBD, the registry is short. We need to identify cases, otherwise we risk losing an opportunity that everyone has been dreaming about.
To help the Jewish Community recognize APBD in its early stages, the APBD Research Foundation created a memory tool which is based on the initials of the disease’s name:
- A – Ashkenazi Jewish descent; Age 40-60, and
- P – Peripheral neuropathy (numbness, weakness, or tingling in the toes, fingers, hands, and/or feet), and
- B – Bathroom frequency beyond the norm, or difficulty with bladder control, and
- D – Diminished energy (This last symptom may develop a little bit later in the disease process.)
Any adult of Ashkenazi Jewish descent who is searching for a diagnosis and sees the A-P-B-D indicators in himself/herself should get tested for APBD. It’s simple. A saliva sample is collected in one’s home and sent to a lab at Columbia University in New York for analysis. The analysis is being underwritten by the APBD Research Foundation.
Information about the registry and a testing kit can be found on APBDRF.org
Recently Mount Sinai Medical Center added APBD to the 58 Jewish Ashkenazi diseases that it covers in its prenatal screening panel. This disease is very real and very devastating for afflicted adults, as well as for our family members.
The Jewish community needs to be engaged as quickly as possible in order for this potential cure to move forward. Perhaps you could mention this during the High Holiday season, to reach the largest audience possible. Perhaps you could share this letter with colleagues who can inform their congregations and contacts, too.
In advance, I thank you for your help.
MY first and last name
MY Street Address
My email address
MY Telephone/Cell Number
Santa Barbara, CA
New York, NY
Silver Spring, MD
APBD Research Foundation
Gregory Weiss, President