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Appreciation for What is Unfolding

Many of you already know that my garden is a fundamental aspect of my life. I find each dimension of the gardenthe change of seasons, the plants that open in the morning and close at night, the patch of sunlight created when I lost a branch in the stormto bring its own opportunity for grace. I noticed it this morning in particular, as this bouquet of lovely peach roses dropped its petals after a couple days in our 100 heat. The petals that lay on the counter top however, were the most intense yellowy-pink with deep magenta edges. It was magnificent, the dried, dying petals. Part of the grace that is delivered to me from the garden is a (sometimes forced) appreciation for what is unfolding.

So, I’m excited to highlight here, for you, some of the changes that we’ve been putting in place at the IPPF and some of the dreams we hope to make into realities over the next year. I hope you’ll find them to be of benefit to you personally; that you’ll see how they help the IPPF serve more and better; and that you will consider sharing with me your expertise, provided from your perspective as a participant in this organization, so that we may serve in the most meaningful way possible.

I know none of you would miss it, but please consider this a jumpstart encouraging you to read Janet’s letter on page 3. There she describes our Health Management Program, the most critical project we are engaged in for 2008. Please offer 30 to 45 minutes of your time to help us document a disease registry that will be the foundation for improved diagnosis, improved treatment protocols, and more extensive research. It’s a small legacy of time that you can leave which will make a huge difference for generations to come.

Also, if you do business on the Internet, take a look at the more than 30 hours Will has spent organizing and simplifying our web site at (www.pemphigus.org). All the informational content remains, however the layout is expected to be more clear and intuitive. In addition, I hope you come to enjoy the brighter colors and our new logo, designed to prepare us to catch the attention of grantmakers and corporate partners and pharmaceutical contributors.

Finally, we have already started preparations for the 2009 Annual Meeting which will be in Los Angeles April 25, 2009, it’s a great chance to learn, share, console, and laugh.

Please continue to join us as we move forward to use the registry as a resource to pursue NIH funding, to train current practitioners in earlier diagnosis and more effective treatments, to support the next generation of dermatologists to gain experience, and to fund and support scientific advances in the effective treatment protocols. And continue to let us know what changes you’d like to see!

Warm regards,

Veröffentlicht unter Issue 53 - Summer 2008

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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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