Quarterly
The Journal of International Pemphigus & Pemphigoid Foundation
ISSUE #98 | FALL 2019 The IPPF is a U.S. 501(c)(3) nonprofit organization. EIN: 94-3207871 BOARD OF DIRECTORS David Baron, Chairman Mirella Bucci, PhD, Secretary Sonia Tramel, Treasurer Paul Edwards, MSc, DDS, FRCD(C) Mert Erogul, MD David Sirois, DMD, PhD Ramesh Swamy Debra Tepperman Mindy Unger
Message from the Executive Director
QUARTERLY STAFF Patrick Dunn, Editor-in-Chief, editor@pemphigus.org Anna Lane, Managing Editor Toby Speed, Copyeditor PATIENT EDUCATION CONFERENCE PHOTOGRAPHY Jim Manley CONTRIBUTING WRITERS Assoc. Pemphigus Pemphigoïde France Kelly Calabrese Ron Feldman Nicole Fett Carolyn Fota Lisa Ann Krutzik
Terry Wolinsky McDonald Carola Pulvirenti Brittney Schultz Becky Strong Jens Wrammert Marc Yale
IPPF STAFF Patrick Dunn, MFA, Marketing and Communications Director Nelly Filippov, Administrative Assistant Carolyn Fota, Peer Health Coach Anna Lane, MSc, Communications Assistant Mei Ling Moore, Peer Health Coach Bryon Scott, Awareness Ambassador Coordinator Janet Segall, Peer Health Coach Rudy Soto, Peer Health Coach Rebecca Strong, Outreach Director Amethyst Yale, Outreach Assistant Marc Yale, Executive Director INTERNATIONAL PEMPHIGUS & PEMPHIGOID FOUNDATION 1331 Garden Highway, Suite 100, Sacramento, CA 95833 Toll free: 855-4PEMPHIGUS tel: 916-922-1298 info@pemphigus.org | www.pemphigus.org POSTMASTER: Please send address changes to IPPF, 1331 Garden Highway #100, Sacramento, CA 95833, USA The Quarterly is published four times a year and provided free to donors as a thank you for their support. The material presented is not intended as medical advice or to promote one product or service over another. Readers should consult their physicians before making changes to their health regimen. The contents of the Quarterly cannot be reproduced or copied without written permission from the IPPF. Inquiries should be directed to: IPPF, 1331 Garden Hwy #100, Sacramento CA 95833, USA. The opinions of contributors are not necessarily those of the IPPF. We can reproduce articles and provide electronic copies of issues. If you would like to submit a story for consideration, please contact our editors prior to submitting your story: editor@pemphigus.org © 2019 International Pemphigus & Pemphigoid Foundation Printed in the USA by our friends at SUNDANCE PRESS, Tucson, AZ. www.sundancepress.com
As 2019 draws to a close, I can’t help but think about all the progress the IPPF has made this year. Our small, but mighty, community has increased disease recognition and knowledge through public advocacy events, our “Biopsies Saves Lives” campaign, research and drug development partnerships, and our Patient Education Conference. The IPPF has strengthened existing collaborations and forged new relationships across the globe, providing hope for the future of our community. Since the Foundation’s humble beginning 25 years ago, we have sought to make a difference in the lives of those affected by pemphigus and pemphigoid. Through all our efforts and the commitment of so many, the IPPF community continues to grow stronger. However, we still have so much to accomplish. We can all agree that there is still more that we don’t understand about theses diseases than what we do understand; we need to get people diagnosed faster; we need better treatments that don’t wreak havoc on our overall health; we need therapies that don’t severely impact our quality of life; we need to put pemphigus and pemphigoid “on the map;” and we need more medical research. Only together can we meet these challenges head on and take the actions needed to find a cure for pemphigus and pemphigoid! I hope that this edition of the Quarterly shows you what being part of the IPPF community is all about. I encourage you to become more involved with the IPPF by becoming an advocate or ambassador, attending a support group, or by joining the IPPF Natural History Study so our community can learn more about these diseases. Our community is the thread that connects patients, caregivers, researchers, and physicians. With your help, we can build on what we have already accomplished. By working together, we can make our community even stronger! Gratefully,
Marc Yale IPPF Executive Director and MMP Patient marc@pemphigus.org
