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View from the Top

This issue of the Quarterly focuses on our theme of Support. Support is one of the founding principles of the IPPF, stated in our Mission as: The IPPF provides direct access to innovative and effective support that:

  • promotes the very best health care,
  • improves quality of life,
  • stimulates community resources,
  • advocates for favorable government policies,
  • accelerates the pace of scientific discovery, and
  • is the world’s best source of information on P/P

Interestingly, this issue of our Newsletter became one

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of our most jam packed when we announced the theme. What I loved, as all the stories came in, was the many different ways people have found to provide support to each other through the IPPF.

Marc answers specific questions and cheers people on in the Forum; Mindy offers to use her expertise to promote donor development (Bio page 4); Amanda submits an English paper for a Senior project, on rare disease funding challenges, and takes the message to her high school (; our insurance coverage advocate, Brian, secured IVIg and/or Rituxan for two extra-challenging insurance coverage puzzles for IPPF members (see page 4), Alan and Terry made presentations at dental professional Seminars/Conferences to educate about P/P (pp. 5 and 6); Madeline and Danielle created new Wound Care information sheets (; Cathy has gathered more than $5,000 worth of items for auction at the Annual Meeting (; Rebecca finished the video check it out at (there’s both an educational one and the tear jerker); Badri and Miki edited d endless dry medical documents and fun new brochures; Will developed a News and Info page on the website (; and Janet has undertaken a rigorous Professional Health Coach Certification Program which will result in her accreditation by the American College of Sports Medicine, and will allow her to expand her coaching services to even more patients in need ( Many support us with direct donations.

When I was a Trauma Chaplain we had a few standard prayers that could be of service no matter the spiritual (or not) background of the person being ministered to. My favorite ended with, When the cold dark wind blows through the hollows of your soul, gather together and share what you know to be true.

It’s a scary, rainy night here in Sacramento as I write this; the economy is troubling and someone today was told they have pemphigus. All we have to comfort us on this crazy journey is the compassion shared by another. The magic thread, the uncommon bond, that draws each of you into the service of other P/P patients is the deep understanding that comes because you also have walked that path, and can share what you know to be true.

I look forward to the gathering together part, at the IPPF Annual Meeting, April 24-26, 2009.

Publicado em Issue 58 - Fall 2009


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