CJD Foundation Newsletter 12.12.06

CJD Foundation Newsletter
December, 2006

Dear Friends,

PLEASE LOG ON TO OUR BRAND NEW WEBSITE!!! WWW.CJDFOUNDATION.ORG. This site was donated to the CJD Foundation by Rhett Daniel of Daniel IT in loving memory of his father Terry Daniel. We are deeply grateful to Rhett and his team for their dedication, generosity and patience!

I am attaching the Newsletter from the NeuroPrion 2006 meeting I spoke at in Turin, Italy. I wrote a brief article on page 2. The newsletter will give you an idea of the scope of this exciting meeting.

On Friday, December 15 I will once again be attending an FDA meeting where the topic to be discussed will be blood safety. If there were ever any doubts about the seriousness of this issue or the extent of concern for our safety on the part of the FDA this should help alleviate them. Blood safety and prion risks have been the topic of every FDA meeting for the past three years. The scientists and various affected agencies and companies making formal presentations will once againhighlight every facet of blood safety issues known today.

The CJD Foundation has been diligently looking for funding sources. Carole Laderman, our outstanding political advocacy chairman, has also taken on the role of development. She is investigating possible funding partners. If you have any connections or suggestions for her please let us know.

Our Annual Fund drive is bringing in much needed donations. In January, I will be able to give you a report on the total amount raised. We thank those of you who have replied so generously to our Annual Fund letter which in turn allows us to reach out in so many ways. I hope those of you who have not yet donated will respond soon.

Thus far we have used discretionary funds to help one family pay for short term medical expenses and we are hoping to continue to be able to offer limited “no strings attached” help to families in need.

In February I will be traveling to Alberta Canada (brrrr) to speak at the PrioNet meeting. I was invited to this Canadian scientific conference to present the same type of speech I gave in Turin. It is an honor to be able to talk about families and the work of the CJD Foundation and the new CJD International Support Alliance.

Plans are already underway for our next CJD Foundation Family Conference to be held July 6-8 with Political Advocacy Day July 9. Please mark your calendars and join us again in Washington D.C. for this outstanding event.

I want to take a moment to wish each of you a very healing and peaceful holiday season and New Year. These wishes are echoed by Ruthie, Linda and Wanda and our entire Board of Directors.

My very best to each of you,

Florence