Hope this E-mail finds you well.
As you know, I have been suffering declining gait, impaired balance, chronic fatigue, and incontinence. These problems have worsened in recent years. Thankfully, I finally got a definitive diagnosis for this condition: it’s a rare disease called the Adult Polyglucosan Body Disease or APBD (See the attached primer for more on the disease).
Currently, there is no treatment or cure for APBD. But I connected with the APBD Research Foundation (http://apbdrf.org/) and they offer support to me, including monthly chat sessions and education. Equally important, they sponsor scientific research for the treatment and cure of APBD.
With the advice of a scientific advisory board, the Foundation has undertaken a multifaceted research program to find the cure. (See the primer on their APBD-sponsored research). But to accelerate this research program and prepare for clinical trials, they need further financial support.
On May 7, 2016 The University of Pennsylvania’s Orphan Disease Center is sponsoring The Million Dollar Bike Ride for Rare Disease Research. Penn will match your donation dollar-for-dollar without any administrative charges taken out. Pooling these funds, Penn will award and administer grants to APBD research scientists for APBDRF-designated areas. Your donation goes directly to Penn Medical and it is tax deductible.
Please follow this link (https://goo.gl/G2XnDD) to donate, clicking the blue DONATE button. My name can be found under the FIND A PERSON link at the bottom of the donation form. Your donation will give me hope for the future.
God bless you!