From the Top

It has been so much fun putting this newsletter together, it feels like looking through all the photos right after a wedding and remembering all the hilarious and bittersweet moments, all of the gifts and all of the challenges, the people who touch your life in ways that they will never know.

Thanks you all!

We have been in a whirlwind since the Annual Meeting. A lot of amazing things happen when the forces of energy and inspiration swirl together in a room. First off, in a significant showing of trust in the direction the IPPF is heading and a pressing feeling of urgency about how much needs to be done to find real solutions for P/P folks, Mindy and Howard Unger have challenged us all with an opportunity to earn as much as $200,000 in a matching grant to double all donations received from you in 2009.

Mindy and Howard, with a deep understanding of the political, financial and scientific climate, see that the IPPFs strategy of developing a disease registry and documenting not just the numbers of the population (although that is important to calculate costs of failure to treat) but also the course of the diseasesso that it can be evaluated what course(s) of treatments work well, in which circumstancesas our next necessary step. And, in moving toward the future, we will integrate a blood serum and tissue-sample bank which makes materials available for science researchers at the DNA, antibody and medicine-chemical levels. This is a huge step forward. One of the main barriers to better treatments for P/P is that so few people are available or accessible to help us even guess at patterns that surely exist.

One of the hardest things about this work is having to tell so many scared and hurting people who call here for some reassurance that there are not many answers. How many people have P/P Don’t know. Is it better to start with high pred. and go down or start conservatively and add Don’t know. How long will it take for the blisters to get under control Don’t know. What does the scientific research show Can’t tell, too small a sample size. Why isn’t IVIg covered by my insurance It’s experimental for P, not enough people have been documented to decide if it is safe and effective. How much will this disease cost me per year Can’t tell. Yes, human beings are different and have different experiences with different courses of treatments, but we don’t even have a good guess about the costs and benefits of a wide variety of things being tried on you, with undocumented or properly evaluated benefits or risks.

So, our goal this year is to raise $600,000. In 2008, 82% of our $330,000 budget was allocated to Patient Support, Education and Advocacy; Administration and Overhead (that’s rent, phones, etc.) cost 11% and Fundraising 7%. In 2009 we have further reduced our costs as, for example, the Internet helps us save printing and mailing costs for the paper Newsletter as more people, by reading online or printing at home, volunteer to save trees and have more of their donation go to outreach programs instead.


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have already begun the registry of individual volunteers (thanks to all of you in the Health Management Program for adding to our knowledge the rest of you, let me know when you are ready to be counted!). Now we need to move into collecting medical-office data (private, not-identified) about how many immunoflorescence tests were performed, for example, and how many diagnoses made and how much insurance billing is attributable to P/P at major insurance companies, etc.


Who’s out there and what do they need We’re working to find some answers for you, and your contribution can help tomorrow’s patients know more too.

カテゴリー: Issue 57 - Summer 2009
The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.