Category Archives: Issue 70 – Fall 2012

Can you believe the 2012 Holiday Season is a few calendar page turns away? I barely remember Summer beginning — let alone ending in a few weeks.  But here we are in September and the whirlwind of activity throughout our community has kept us busy. The IPPF has a new home and our good friend and IPPF Founder Janet Segall, paid us a visit. She liked the atmosphere and accommodations and asked me to tell everyone hello, so, “Janet says, ‘Hello everyone!’” The IPPF Fundraising Committee has been successful in get- ting funds for our Awareness Campaign (see page 8). Since most P/P patients have oral lesions, this three-year awareness program targets dentists in training and in practice with the hopes of reducing the diagnosis time from the five-physician, 10-month cycle to a single visit (maybe two) during the first few months. Keep up the great work, Team! Our Registry is key to unlocking the mysteries of pemphigus and pemphigoid.

The information we have is compelling, but more information is better. I ask each of you to take 15 minutes and complete the Registry. We need FEWER THAN 300 more people to surpass 1,000 participants and give researchers a better understanding of P/P. Your contact information is NEVER shared and when we look at the responses, all we see is a number, not a name; a state/province, not an address. Can YOU help us pass 1,000 by the next issue? I think you can at www.pempihgus.org/registry. The 2013 Patient Conference (formerly the Annual Patient/Doctor Meeting) will be in San Francisco, April 26-28, 2013. The Planning Committee is looking to capi- talize on the success in Boston — and we think San Francisco is the place to do it. If you have never been to the Bay Area, there is no better time that April 2013. And if you live in the Bay Area, join us at Stanford September 29, 2012 for the Bay Area Sup- port Group Meeting (11 am – 2 pm, pemphig.us/ippf-basg-201209). The Holiday Fundraiser will be gearing up in a couple of months and I am challeng- ing each and every one of you to find one person to match your donation. Imagine if 2,000 people gave just $50 — and their one friend gave $50. These donations will af- ford us the opportunity to have more Peer Health Coaches to answer your questions, more informational materials for physician offices, more educational materials for patients – and the list goes on … but we need your help to make 2013 bigger and bet- ter than 2012. And don’t forget you can now give a monthly amount  that is automat- ically deducted from your credit card. How about giving $25 a month instead of $100 all at once? It’s just as easy and makes a big impact for us – and a bigger tax deduc- tion for you! You can always donate online at www.pemphigus.org/donate. Thank you for your continued support and we hope you enjoy this issue.