Recent Press and Blogger Coverage:
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Frequent misdiagnosis of adult polyglucosan body disease
Robert's Story
Article on page 5 of Sept/Oct issue. Ad on page 26 of Sept/Oct issue
Update on APBD and Misdiagnoses
A Medical Mystery
David's Story
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In this section you will find personal accounts of people affected by APBD. The APBDRF as a patient support group does not endorse any health practitioners, therapies, medicines, etc.
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APBD TRIBE
While researchers chip away at finding the cause and cure for APBD, patients, partners, and care givers seek work-arounds for disease symptoms. "Tribe" members are constantly on the lookout for tips and ideas to help blunt their challenges. Visit apbdtribe.com, to see what we have to share.
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APBD in Neurology Now
Thanks to the work of David Epstein, our organization has been included in the Resource Central Section of Neurology Now magazine. You can read it online here, and order a FREE subscription to the magazine as well.
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Article of Interest:
A retrospective study of 30 patients. Common initial symptoms. Common initial misdiagnoses. Signs and findings at time of correct diagnosis. Reason for diagnosis delays.
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Letter from the President
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Gregory Weiss,
APBD President and Founder
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Dear APBD Community:
The Research Foundation has received a dream offer! We have been approached by a startup company in Israel that is considering paying for and running one of our drug initiatives!
For our part, we must present a registry of 200 patients with a confirmed APBD diagnosis. While our patient registry is currently shy of that number, we believe the goal can be reached.
The Research Foundation is throwing its full weight into finding individuals who are suffering from APBD but have been misdiagnosed. We need your help to be successful.
Click here to retrieve the OPEN LETTER we've developed to get the word out to the Ashkenazi Jewish community. I urge you, implore you to share it with:
- family members
- friends
- rabbis
- your barber or hairdresser
- your dentist
- Jewish newspapers
- Jewish social organizations
- Jewish museums
- JCC directors
- favorite kosher restaurants
- book group members
- Jewish radio program hosts
- you name it
We would especially love to learn that rabbis around the world used the High Holidays as an opportunity to help us reach large numbers of Jews very quickly. They need to be immediately alerted.
Do you have access to Facebook? Post the actual OPEN LETTER or this hyperlink that gets your readers to it, http://apbdrf.org/open-letter/ . Will your Facebook friends help you by sharing the hyperlink on their timelines, and by requesting their friends do the same? Ask!
Let's go viral with our outreach! If you think a connection might lead to more patients being found and registered, make it.
Please get involved in this groundbreaking moment. Start today. Time is of the essence.
All the best,
Gregory Weiss
President, APBD Research Foundation
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Conversation Openers
Are you having trouble with the words you'll use to introduce yourself and the OPEN LETTER? Here's a message you could adapt to opening a conversation, leaving a voice message, or emailing someone (like your rabbi, for example).
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Posing On Facebook: Let's Go Viral
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Would You Like To Email Your Rabbi?
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Help Get The Word Out In Jewish Newspapers and Magazines
As part of our outreach, we'd like to place the OPEN LETTER multiple times in major Jewish newspapers in London, Johannesburg, Montreal, New York City, Philadelphia, Washington DC, Atlanta, Miami, Dallas, San Francisco, LA, Chicago, Cleveland, and Minneapolis. Do you have any connections to Jewish press editors, writers, or publishers? If not, your donation can fund paid advertising. Please contact Executive Director Sharon Steinberg at Sharon@APBDRF.org to get details.
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