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To Anna, the IPPF means hope when all hope was gone. For Steve, the IPPF means discovering hundreds of other patients when he thought he was alone. And Jack — Jack says he owes the IPPF his life. To me, the IPPF means helping my ‘pem-family’ find comfort, strength, and support through our dedicated staff and volunteers. Phone calls and emails come in to our offices every day. Between the new patient calls and flare-up questions, there are little rays of sunshine that bring hope. Thousands of people around the world re- member their first call, how the IPPF was there for them, and what the IPPF means to them. Now it’s your turn. Please contribute to the IPPF this Holiday Season. Your donation funds essential, life-saving programs and services such as the Regis- try, Peer Health Coaches, Awareness, and more. And now you can be a Sustaining Donor! Our organization is lean, so a higher percent- age of your money goes directly to the programs we offer and the re- search initiatives we sponsor. You can safely donate online at www.pemphigus.org/give2012 or use the form below. As I look back over the past year, I remember how many members of my pem-family I have talked with and helped with the gift of hope. I know for our Peer Health Coaches that number is even higher. This holiday season give the gift of knowledge, support… and hope. Happy Holidays and Happy New Year!
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‘Tis the season for giving thanks and celebrating the holidays with those we love. Things  can become so hectic that we forget to thank those around us for being a part of our lives. Personally, I am thankful for my parents and their advice over the years. “Bird” and “Pops,” as they are affectionately referred to, were never short on tough love or supportive words. I thank my love- ly wife, Christina, for her loving support and encouragement that make me a better person. I am thankful for my children, Will, Haley, Alannah, and Noah, and hope each of them support causes dear to their heart. I thank Janet Segall for bringing me into the IPPF and our Board of Directors for giving me the opportunity to work with our won- derful coaches, advisors, and patients around the world. The un- derlying theme: I am thankful for the support of others and do my best to pay it forward. The IPPF does more than support patients — it supports caregiv- ers, family, friends, and physicians. Thank you to Marc Yale and our Peer Health Coaches who collectively have closed more than 500 cases this year answering calls, emails, and postings from people all over the world. Many of our “veteran” patients still remember that scared feeling they had before calling the IPPF and how relieved they felt after receiving support and information. They now pay it forward, helping others in our community. Recently, a newly diagnosed patient’s daughter called the office. You could hear the relief in her voice when I told her, “Your mom will be fine. Now let’s focus on helping you understand the disease and treatments.” After, she sent me an email thanking me for the in- formation, but more for just taking the time to talk to her. I replied: “No, thank you for calling.” Yes, thank you for the calls, emails, and interactions that allow us to support one another. You should feel good knowing your involve- ment helps others at a time when they need the IPPF most. From my family to yours, have a safe and joyous holiday and a Happy New Year! From the Top Will Zrnchik Chief Executive Officer will@pemphigus.org PS: Help us continue our important work by donating today. Contribute online at www.pemphigus.org/give2012 or use the form on page 13. International Pemphigus & Pemphigoid Foundation2 POSTMASTER: Highway #100, Sacramento, CA 95833, United States of America. The Quarterly is published four times a year in the Spring, Summer, Fall and Winter and provided free of charge to donors as a thank you for their support. The material presented in our journal is not intended as medical advice. Readers are urged to consult their physicians before making any changes in their health regimen. The contents of the Quarterly cannot be reproduced or copied without written permission of the IPPF. All inquiries regarding material from this publication should be directed to: IPPF, Attn: Rights and Permissions, 1331 Garden Hwy #100, Sacramento CA 95833, USA. We are able to reproduce articles and provide electronic copies of issues. The cost for this service varies based on the amount and type of media preferred.  If you are interested in submitting a story for print consideration, please contact the IPPF prior to submitting your story. Our staff will assist you in preparing your article for future publishing in an issue that relates to your topic. BOARD OF DIRECTORS David A. Sirois, DMD, PhD Rebecca Oling, MLS Lee A. Heins William Gerstner Dan Goodwill Badri Rengarajan, MD Sonia Tramel Mindy Unger Terry Wolinsky McDonald, PhD J. Gregory Wright, MBA MEDICAL ADVISORY BOARD Victoria Werth, MD Sergei Grando, MD, PhD, DSci Russell P. Hall III, MD Takashi Hashimoto, MD Michael Hertl, MD Pascal Joly, MD Marcel Jonkman, MD, PhD Neil Korman, MD, PhD M. Peter Marinkovich, MD Dedee F. Murrell, MD Animesh A. Sinha, MD, PhD David Sirois, DMD, PhD Robert A. Swerlick, MD ADMINISTRATIVE STAFF AND SUPPORT William Zrnchik, MBA, MNM Kevin Cruz PEER HEALTH COACHES Marc Yale, Sharon Hickey Jack
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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.