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From the Top

I was in Tennessee this week, seeing the colors of the trees burn across the ridges, and feeling the fall induced opportunity to feel gratitude. As you get this, we’ll all be deep into the holidays and winter, giving us a chance to reflect on the gifts of the year.

Some things we’ve had a chance to be grateful for this past year include the vision and inspiration that Janet dedicated to the cause of helping those with acommon bond”, the courageous/relentless visioning of the future by Dave Sirois, President of your Board, whom I work with weekly on our strategic plan to

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make headway in awareness, research, treatment and advocacy. And, the rest of the Board each gives, above and beyond, of their own special talents.

Will, of course. He gives his all, all the time, (my favorite is, Sure, I can do that!”) with a wealth of expertise and skill and energy to learn new things that is beyond compare. Thanks, Will, for it ALL!

And, of course, each of us is so grateful for the generosity of others who share your concerns and are moved to making a difference. The Double the Difference Donation-Match Campaign inspired over 200 NEW donors in 2009 and over 41 donors gave more this year than they did last yearand there’s still one month to go! Please consider the impact a donation this year could make when you receive your holiday fund-drive mailerand give your feedback on what you care about, it matters to all of us!

With these funds we have build an online data registry to make data collection faster, easier and more accurate (see information about our 1010 in 2010 drive on page 5 of the printed Quarterly); we are partnering with National Disease Research Interchange (NDRI) and the NIH to begin blood and tissue sample collection to be used for direct medical research; and we have trained and added two new Peer Health Coaches, Marc (BP, in the West) and Yvette (PV, in the East) to get more patient questions answered faster and more conveniently; finally, we will be hosting a Scientific/Medical Consensus Conference of the luminary P/P doctors worldwide and an audience of over 150 doctors, in the Fall of 2010 in conjunction with the NIH. There, the goal is an agreed-upon, evidence-based protocol that can be shared with doctors with less expertise, to improve treatment outcomes and a discussion of promising discoveries at the cellular/immunological level. These conference should result in at least two publications advancing medical knowledge of P/P worldwide. And the МФПР 2010 Annual Meeting, of course!

Which just leaves the over 4,000 of you we communicate with monthly by email, the over 600 who choose to subscribe to our paper newsletter, the 4,600 who read our newest news and information in real time on our News & Information site http://www.pemphigus.org/wordpress/category/news/, Facebook, and Twitter, and the more than 350 new patients who personally contacted us this year!

Each of you givesin the thank-yous you share with us, in the discussions you have with your neighbors, in the awareness building projects you develop in your communities, in the outreach you do to others that are hurting, or confused, or afraid, in the courage with which you move forward. Your time, and a hand along this journey, are gifts beyond measure.

Blessings,


Molly

Опубликовано в Issue 60 - Spring 2010

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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.

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