*We have several research initiatives closing in on the clinical trial stage. The foundation needs to prepare our APBD community for these potential trials.
*The foundation also needs to ensure pharmaceutical development occurs when a clinical trial proves successful.
*Finally, the foundation needs to expand our physician and community awareness campaigns so more symptomatic patients can bring their search for a diagnosis to a conclusion.
You can see that it is more important than ever for our wonderful community to fully support a funding drive that keeps the foundation up and running.
While I have your attention, let me share a significant goal for the foundation's coming year:
Larry Schwartz, statistician and a member of our APBD community, has been writing extensively on APBD. In his presentation, Overview of APBD Statistical Research
, he estimates the prevalence of APBD to be over 5,000 in the Ashkenazi Jewish population -- but many of that number have been misdiagnosed with MS. We are working hard to confirm his analysis with outside reviewers and to reduce APBD misdiagnoses for MS with the National MS Society.
Why so much effort to correct misdiagnoses?
First, every patient deserves an answer -- a correct answer.
Secondly, finding and enrolling additional APBD-afflicted patients is extremely important to drug development. The pharmaceutical business community closely examines disease prevalence numbers when it decides which new drugs to invest in.
Thirdly, with increased membership, we will be able to periodically survey the community to learn more about APBD and to target future research.
Jojo has her eyes on the horizon. So does the APBD Research Foundation and the patients we work for. Please, will you shine the light for all of us? Your tax deductible contribution means the world to so many.