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Belinda
Research Team
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Posted: Wed Aug 16th, 2006 23:27 |
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Hey Everyone,
The National Organization for Rare Disorders is sponsoring a conference Sept. 28 - Oct. 1, 2006 in Bethesda, MD that will cover many of the topics we've been working on. The conference theme is: "Road Map for Rare Disease Research." Speakers from NIH, FDA, patient organizations and industry will talk about issues related to rare disease research.
Since several of the Th1 diseases fall into the category of rare diseases, we need to be there! The Board of ARF decided JR Foutin and I are going to attend and try to make a positive impact on some key people who will be there:
- Dr. Andrew Von Eschenbach, acting FDA Commissioner
- Raymond Woosley, MD, PhD President and CEO, The Critical Path Institute
- Dr. Marlene Haffner, Director, FDA Office of Orphan Products Development
- Dr. Janet Wookcock, FDA Deputy Commissioner for Operations
This looks like a great opportunity to represent the foundation and get the word out about idiopathic Th1 diseases and how the MP is a cure. However, the foundation already has plans to sponsor Trevor at some medical conferences in the next few months, and we don't want to detract from those plans.
We could use some financial help here. Will you please help send us to Bethesda by making a small donation to the foundation today, this week or as soon as you have the opportunity? This is where you can make a difference, and we need you.
Here is the link to information on how to donate to the foundation. We take donations using PayPal or you can send a check using snail mail to
Autoimmunity Research Foundation,
3423 Hill Canyon Ave,
Thousand Oaks,
CA 91360, USA
I know we can count on you.
Thanks,
Belinda
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jcwat101
Research Professional
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Posted: Thu Aug 17th, 2006 13:40 |
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I'll be sending you something in the mail.
Thanks for representing us.
Joyce Waterhouse
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Belinda
Research Team
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Posted: Fri Sep 8th, 2006 01:02 |
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I am happy to report that, thanks to your response, we have the expenses for the NORD conference coveredl. Janet and I will work hard to do everything we can to open minds, hearts and eyes on this trip.
If you haven't yet sent a donation.. please do make a point to follow through on your good intention. Trevor's calendar is filling up with conferences, meetings and presentations through the end of the year. The foundation sponsers trips not covered by other sources because the directors do not want him to miss out on any opportunity to educate physicans and make the connections needed to move forward.
Thanks to you all,
Belinda
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