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Autumn Wishes

It’s the dog days of summer here in Sacramento, the two weeks in August where our temperatures rise above 100 day after day and the tomatoes drown the garden. By the time you get this we will have a break in the weather; then the long low lines of sunshine signaling Fall, will touch us all.

Autumn veggies This has been a terribly exciting period for the IPPF and pemphigus/pemphigoid support. We’ve made great progress getting some national PR about P/P and the IPPF. Many people from the Email Discussion Group responded to my call and contributed very powerful testimonials about the gifts that other P/P patients (and caregivers) have contributed to their healing process, and the work the IPPF has done in putting this peer support system in place. {quotes align=right}We’ve used these powerful stories to generate support in the media, with corporate donors, and with medical professionals.{/quotes}

In addition, Rebecca, PV in New York, was on the Richard Cohen radio show about people dealing with chronic disease. Hear Rebecca’s interview at our web site (www.pemphigus.org/makeadifference). Rebecca has also made contact with the writers of the TV show House and Janet to ABC’s Medical Mysteries. We’re looking for powerful misdiagnosis/frustrating-doctor experiences, to send in as proposals for story lines on these popular national TV shows.

I have received over 100 requests from people asking to participate in fundraising projects, such as the, Are You Smarter Then a Six Grader fundraiser put on by Hickory Middle Schools Freedom Hawks. They raised $424 and sent it to the IPPF. We need volunteers to make calls or visits to doctors offices, bring them information about P/P diagnoses, support materials to give to patients, and offering free subscriptions of our newsletter so doctors may become more informed, to help them diagnose patients in the future.

Janet has enrolled over 50 people in the Gezondheid Management programma. We’re on our way to having enough people participating to explore possible trends and gather information for future clinical trials. In addition, the Gezondheid Management programma is also meant as a resource for all of youto provide support and advice while you navigate this road. Please feel free to call Janet with questions and concerns whether it’s time for you to update your survey or not.

We are also beginning the process of partnering with the suppliers of products that our patients have found to be helpful. Most recently, we have partnered with MedicAlert jewelry company. They will provide a discount for medic ID bracelets to IPPF members as well as make a donation to the IPPF.

Most of this progress has been fostered by you sharing your ideas with me about what could be helpful to you. Your generous support of time and energy that many of you have given to actually make these things happen. Thank you so much, and have a wonderful Fall.

Molly

Geplaatst in Issue 54 - Fall 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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