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DR. AIMEE PAYNE's NEW RESEARCH Closer to a Cure?

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DR. AIMEE PAYNE's NEW RESEARCH Closer to a Cure? RESEARCH HIGHLIGHTS | NEW IPPF OUTREACH MANAGER | ADVOCATING ON CAPITOL HILL QuarterlyJournal of the International Pemphigus & Pemphigoid Foundation Goes to Austin: Patient Conference Recap DR. AIMEE PAYNE'S NEW RESEARCH Closer to a cure? FALL 2016 • ISSUE #86 PEMPHIGUS.ORG FALL 2016 10 14 FEATURES DEPARTMENTS 10 Engineering the Immune System Message from the Director 3 To Correct Its Own Flaws Marc Yale A Q&A WITH AIMEE PAYNE, MD, PHD Awareness Noelle DeLaney Greetings from the New 4 14 2016 Patient Conference IPPF Outreach Manager REPORT FROM AUSTIN, TEXAS Becky Strong Becky Strong Advocacy 18 The Walter Lever Rally for Medical Research 5 Memorial Lecture Award Sarah Gordon Tufts University School of Medicine The IPPF, American Academy of 6 Dermatology, and Me 5 Becky Strong Research Highlights Molecular Events at Play in PV and BP 8 Mirella Bucci, PhD 4 6 2 Quarterly | Fall 2016 www.pemphigus.org Quarterly The Journal of International Pemphigus & Pemphigoid Foundation Message from the ISSUE #86 | FALL 2016 The IPPF is a U.S. 501(c)(3) nonprofi t organization. EIN: 94-3207871 Director BOARD OF DIRECTORS This issue of the Quarterly has great signifi cance Todd Kuh, Chairman Mert Erogul Mirella Bucci, PhD, Secretary William Gerstner to me and the team as we get to share the suc- Sonia Tramel, Treasurer David Sirois, DMD, PhD cess of the 19th Annual Patient Conference in David Baron Mindy Unger Austin, Texas. This year’s conference would not MEDICAL ADVISORY BOARD Sergei Grando, MD, PhD, DSci, UC Irvine, Irvine CA have been possible without the tireless eff ort of Noelle DeLaney, Patient Neil Korman, MC, PhD, Case Western Reserve University, Cleveland OH Services Manager. Our community owes her our gratitude. Although M. Peter Marinkovich, MD, Stanford University, Stanford CA Dedee F. Murrell, MD, University of New South Wales, Australia Noelle has left the foundation, she will continue to volunteer for the Animesh A. Sinha, MD, PhD, University of Buff alo, Buff alo NY IPPF in the future. The conference brought together many key individu- David A. Sirois, DMD, PhD, NYU College of Dentistry, New York NY Victoria Werth, MD, University of Pennsylvania, Philadelphia PA als of the pemphigus and pemphigoid community. Patients from across QUARTERLY STAFF the country, expert dermatologists, oral medicine specialists, disease Patrick Dunn, Editor-in-Chief, [email protected] researchers, IPPF board members, staff , and our pharmaceutical part- Toby Speed, Copyeditor ners all assembled to learn from one another and celebrate another CONTRIBUTING WRITERS Mirella Bucci, PhD successful year. I would like to extend a very special thank you to the Noelle DeLaney conference host, Dr. Terry Rees from Texas A&M School of Dentistry, Sarah Gordon Rebecca Strong, RN whose support was unwavering. Marc Yale As you can see by many of the articles in this edition, pemphigus and CONTENT REVIEW TEAM Vanessa Baron pemphigoid research is beginning to take front-and-center in our quest Sandra Gittlen for a cure. The IPPF is continually looking for ways to promote research Janet Segall opportunities, improve diagnostic delays, advocate for treatments, and COVER "Pennybacker Bridge: Austin, TX" by Patrick Dunn support each and every one of you. As you will discover in this edition, IPPF STAFF recent research by the Japanese group at Tohoku University, led by Dr. Marc Yale, Interim Executive Director Taku Fujimura and Dr. Setsuya Aiba, as well as work being done at the Kate E. Frantz, MPH, Awareness Program Manager Patrick Dunn, MFA, Communications Manager University of Pennsylvania by Dr. Aimee Payne and Dr. Michael Milone, Rebecca Strong, RN, Outreach Manager are just two examples of the possibilities for learning about disease trig- Monique Rivera, Administrative Assistant Mei Ling Moore, Peer Health Coach gers and treatments for our patients. Janet Segall, Peer Health Coach Jack Sherman, Peer Health Coach Pemphigus and pemphigoid awareness and advocacy opportunities con- Hannah Heinzig, BNS, Patient Educator Bryon Scott, Volunteer Awareness Ambassador Coordinator tinue to grow. Patient participation and physician recognition are taking Debra Fuentes, Cristo Rey Intern center-stage. Becky Strong is our new Outreach Manager, and she will Niko Pretelin, Cristo Rey Intern be working with all of our stakeholders to improve patient and physician INTERNATIONAL PEMPHIGUS & PEMPHIGOID FOUNDATION education, community engagement, and support services. In this issue, 1331 Garden Highway, Suite 100, Sacramento, CA 95833 toll free: 855-4PEMPHIGUS tel: 916-922-1298 you will learn how patients are getting involved in clinical trials, advocat- [email protected] | www.pemphigus.org ing with their congressional members, and submitting artwork to help POSTMASTER: Please send address changes to IPPF, 1331 Garden Highway #100, Sacramento, CA 95833, USA create awareness. Let us know how you want to get involved and become The Quarterly is published four times a year and provided free to empowered! donors as a thank you for their support. The material presented is not intended as medical advice or to promote one We are in an extraordinary time. Science and medicine are moving at an product or service over another. Readers should consult incredible pace. I am confi dent that the opportunity to fi nd a cure for their physicians before making changes to their health regimen. The contents of the Quarterly cannot be reproduced or pemphigus and pemphigoid could be within our reach. I continue to be copied without written permission from the IPPF. Inquiries should be directed to: IPPF, 1331 Garden Hwy #100, Sacramento CA 95833, inspired by all of you and your commitment to improving the quality of USA. The opinions of contributors are not necessarily life of all people aff ected by pemphigus and pemphigoid. those of the IPPF. We can reproduce articles and provide electronic copies of issues. If you would like to submit a story for Thanks for your support, consideration, please contact the Editor-in-Chief prior to submitting your story: [email protected] © 2016 International Pemphigus & Pemphigoid Foundation Printed in the USA by our friends at SUNDANCE PRESS, Tucson, AZ. www.sundancepress.com Marc Yale IPPF Executive Director [email protected] Greetings from the New IPPF Outreach Manager: BECKY STRONG Awareness ello all! Working for the IPPF has Hbeen something I have been inter- ested in doing for about five years, since my pemphigus vulgaris finally got under con- trol. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our commu- nity pulls together and rallies for each other; it’s amazing how we sincerely care about one another. The position of Outreach Manager is new to me, as well as to the IPPF. This position was created to be a link between Patient Support and the Awareness Campaign. While these programs have different focuses, they are united by the common goals of education, early diagnosis, and pro- for the challenge! Because of my status as a PV patient moting the best treatments for P/P patients. and my past work in the healthcare field, I feel that I As a result, half of my time will be spent support- am qualified to work with both communities simulta- ing patients. If anybody touched by our diseases has a neously. I promise to work tirelessly to promote quality question, comment, or concern, I am their first point of of life for the members of our community, as well as in contact. It is my responsibility to provide all who con- the dental, medical, and nursing communities. tact me with clear, precise information and resources. I know I would not be where I am today if it weren’t I will also be creating and revising material for print for the IPPF community. So many of you provided me and online, as well as helping to facilitate local support with support, compassion, and encouragement during groups, meetings, and patient education calls. one of the lowest periods of my life. I was young when The other half of my job will be spent raising aware- I was diagnosed. I was scared and felt isolated. But my ness of P/P in the medical community with the goal IPPF friends changed all of that. I want to do that for of reducing patient suffering and diagnostic delays. others. It is my goal to pass along what I’ve learned and Currently, the Awareness Campaign focuses on dental use my knowledge to make a difference in the lives of outreach. I will be coordinating patient presentations P/P patients. And the IPPF has given me this wonder- at universities and looking to recruit, train, and super- ful opportunity to do so. vise other patient speakers and volunteers. I will also Please know you can contact me by email at take over coordinating exhibit booths at conferences [email protected] or by phone at for dentists and medical professionals. (916) 992-1298 x105. I will work to get you the answers www.PutItOnYourRadar.org It sounds like a lot of work — and it is — but I am up you need. I am here for you. 4 Quarterly | Fall 2016 www.pemphigus.org Advocacy Rally for Medical Research Sarah Gordon n Thursday, September members were supportive of our experience, but also a powerful one. O22, I joined 350 advocates efforts to maintain NIH funding, I truly felt that our representatives on Capitol Hill for the Rally for especially Sen. Tester, who seemed were listening closely when I told Medical Research. Our main to have a vested interest in medi- them my story of being diagnosed goal was to encourage members cal research. In addition to our with, and treated for, pemphigus of Congress to continue robust, general request for NIH funding, I vulgaris.
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