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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.

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The 2012 Annual Meeting is in the books – the record books that is! The 15th Annual Meeting surpassed all previous records for the IPPF: attendance, sponsor- ships, speakers, excitement, en- tertainment, and more! A very special THANK YOU goes out to the IPPF’s Annual Meeting Committee. Co-chairs Dr. Terry Wolinsky-McDonald and Will Zrnchik, Sonia Tramel, J. Gregory Wright, and Marc Yale were joined by Dr. A. Razzaque Ahmed and Mr. Alan Papert, both from Boston. The commit- tee started planning the Boston meeting in July 2011 and the re- sults were amazing. The 2012 Annual Meeting would not have been possible were it not for the generosity of our spon- sors and volunteers. Our Plati- num Sponsor was KabaFusion (www.kabafusion.com). Dr. So- hail Masood and his team did ev- erything from helping with regis- tration and handing out awesome gift bags full of swag, to answering patient questions and greeting arriving guests at Saturday eve- ning’s Gala Celebration. The IPPF is pleased to welcome KabaFusion as a partner and we look forward to continued success.
Our Gold Sponsor, AxelaCare (www.axelacare.com), has been a sponsor since 2009 and Mr. Brian Cleary has helped many pemphigus and pemphigoid pa- tients with insurance-related is- sues. Our Silver Sponsors were Cres- cent Healthcare, Inc. (www. crescenthealthcare.com), PNC Wealth Management (www.pnc. com), and NuFactor Specialty Pharmacy (www.nufactor.com). Crescent has been an IPPF spon- sor since our 2006 Annual Meet- ing in New York. Both PNC and NuFactor are new sponsors and the IPPF welcomes them to our family. Our Bronze Sponsors were BIOFUSION (www.biofusion. com), Centric Health Resourc- es (www.centrichealthresourc- es.com), and the Massachusetts Eye Research and Surgery Insti- tution (MERSI, www.mersi.com). Biofusion first sponsored the IPPF back in 2003 and has been a valued partner ever since. Cen- tric has been a sponsor since 2006 and helped develop the free IPPF Health Management Program (www.pemphigus.org/hmp). The IPPF welcomes MERSI as a spon- sor this year and looks forward to the future. The Blistering Disease Sup- port Group from Boston con- tributed hundreds of hours of work to help with planning, din- ner, and entertainment arrange- ments; packaging thousands of product samples; and greeting at- tendees to the meeting. A special thanks goes out to the Stillman’s and Peckrill’s for their leadership of this massive project. The Bos- ton Support Group, led by Alan Papert, helped with site surveys,
event planning and A/V coordi- nation. Alan’s wife, Gloria Papert, was her usual self helping with the registration table, answering attendee questions, and making the event an enjoyable one for ev- eryone. Thank you, Alan and Glo- ria, for your support. Bruce Heath, Vicki Garrison, Phyllis MacPherson, Dr. Shawn Shetty, and Dr. Marsha Fearing from Dr. Ahmed’s office helped with everything from sending let- ters and flyers, to attendee and speaker reservations and regis- tration. And the muscle behind the event, Ike Mahmood and Gh- ulam Ali, helped package, load and transport over 2,000 pounds of donated products. Lastly, Kendra Smith, Con- vention Services Manager at the Hyatt Harborside, worked with the IPPF Annual Meeting Com- mittee to make the impossible possible. Thank you everyone for mak- ing this THE meeting that has raised the bar to a new level. The IPPF invites this year’s attendees, and the entire pemphigus and pemphigoid community, to join us April 26-28, 2013, in San Fran- cisco for the 2013 Annual Meeting (information will be sent out lat- er this year).
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With the Boston skyline as a backdrop, the IPPF’s 15th Annual Meeting kicked off with more than 100 people gathering for Friday night’s Welcome Recep- tion. The Hyatt Harborside Hotel captivated long- time Boston residents with its beautiful view of Bos- ton Harbor and picturesque city skyline. Guests came from near and far to join in our yearly social gather- ing of patients, caregivers, and physicians. The room was buzzing with talk of the weekend’s events as peo- ple shared their stories among friends. SATURDAY Saturday morning began with host Dr. A. Razzaque Ahmed (Director, Center for Blistering Diseases) wel- coming everyone to Boston followed by a congratu- latory video message from Massachusetts Governor Deval Patrick. Newly appointed CEO Will Zrnchik welcomed at- tendees, many of whom came filled with hope for in- formation and answers. He highlighted why people travel from all over the world to be part of these meet- ings: a common hope | an uncommon bond.

Next, IPPF President Dr. David Sirois (New York University) began with a cheerful welcome and an update on the IPPF. As an ultra-orphan disease sup- port organization, the IPPF “sees its primary mission to connect together the different parts of the com- munity that together can give [patients] a better ill- ness experience.” Dr. Sirois invited attendees to par- ticipate in Town Halls, Annual Meetings, the Email Discussion Group, Patient Forums, Facebook, the Pemphigus & Pemphigoid Disease Registry, and IPPF studies and surveys. He then discussed the results of a recent IPPF study that showed delays for initial diagnosis, including a patient seeing five physicians over a 10-month pe- riod.

Dr. Sirois al- so discussed the cor- nerstone of the IPPF’s 2012 efforts: the IPPF Awareness Campaign. This program will focus on physicians in training and in practice to increase recognition of these diseas- es, provide guidelines for treatment and care, and bring new clinicians into medical dermatology committed to bullous diseases through fellowships and scholarships. The opening talk was given by Dr. Grant Anhalt (Johns Hopkins University), who provided a brief overview on pemphigus and pemphigoid. Dr. Anhalt was instrumental in helping Janet Segall found the National Pemphigus Vulgaris Foundation in 1994 (today known as the International Pemphigus Pemphigoid Foundation). Dr. Anhalt’s discussion covered how the immune system uses antibodies against antigens. He also mentioned that autoim- mune diseases are the third most common group of diseases behind cardiovascular diseases and cancer. Dr. Anhalt mentioned how none of the drugs used to treat the disease can be used to treat the target area, but must focus on getting rid of the antibody produced by the immune system. Next, legendary pemphigus and pemphigoid phy- sician Dr. Samuel Moschella (Lahey Clinic Medi- cal Center) told attendees what it was like to treat pemphigus before prednisone was available. His stories of varying treatments and therapies of pemphigus vulgaris malignus were met with silence as he mentioned “70-90% of these patients died from this disease” as a result of infection, malnu-trition, or other elec- trolyte and protein problems, and how it was treated much like burn victims. As Dr. Moschella’s story moved along his time line, the introduction of better therapies and an increased understanding by physicians improved treatment. The first dental talk of the day was given by Dr. Sa- dr Kabani (STRATA Oral Pathology Services) on the oral manifestations of pemphigus. Dr. Kabani men- tioned pemphigus may begin with canker sore-like lesions on a localized area of the gums or inside of the cheek, that can become progressively worse. A com- mon site of involvement is the soft palate. Gum in- volvement is common and might be the only manifestation. Diagno- sis is based mostly on clinical presentation, but must be confirmed by a biopsy and immunoflorescence. Dr. Sook-Bin Woo (Harvard Dental School) dis- cussed the clinical presentation and diagnosis of pemphigoid in the oral cavity. Dr. Woo opened with how pemphigoid is of- ten associated with eye and skin lesions, but more often than not it is associated with purely the oral region, and typically female. She mentioned that blisters are not commonly visible because they rup- ture frequently, so peeling mucous membranes are a good indication. Dr. Woo said a biopsy is a must in properly diagnosing pemphigoid in the mouth. She said 95% of her patients are oral only without skin or eye involvement, but does not rule those areas out until af- ter the patient sees a dermatolo- gist and ophthalmologist. Attendees were then free to at- tend one of seven breakout ses- sions, or workshops. The morn- ing’s sessions focused on oral issues, topical management, and coping with pemphigoid. After- wards, everyone enjoyed a scenic luncheon outdoors in the Grand Pavilion before returning for an afternoon of systemic informa- tion. Dr. Kunal Jajoo (Brigham and Women’s Hospital) began with a talk on esophageal involvement of pemphigus and pemphigoid. The diagnosis of esophageal in- volvement involves radiology and endoscopy. In the majority of pa- tients he cares for, the primary disease has been diagnosed, so he focuses on if there is esophageal involvement using tests like the Barium Swallow (a patient drinks a chalky milk-like substance com- prised of a metallic compound that shows up on x-ray). He also mentioned careful consideration must be given before biopsying the esophagus so not to cause fur- ther damage, unless the diagno- sis is uncertain or the results will change disease management. Next was a presentation on oc- ular involvement by internation- ally recognized eye specialist Dr. C. Stephen Foster (Massachusetts Eye Research and Surgery Insti- tute (MERSI) and Harvard Med- ical School). He gave a basic over- view of the eye, and how the bulk of the oc- ular area is not af- fected by the blis- tering, but how it is focused on conjuncti- va (the lining of the eyelids and the whites of the eye) and the cor- nea itself. Unlike the skin, the eye is very unforgiving of chronic in- flammation and, therefore, thera- py should be aggressive for MMP patients with eye involvement.

Vice Chair of the IPPF Med- ical Advisory Board Dr. Sergei Grando (University of Califor- nia – Irvine) spoke about system- ic corticosteroids and if they are “friends or foe.” It is important to learn that prednisone can be your friend. It has reduced the mor- tality rate of pemphigus to 5-12% when used with a steroid sparing agent/reg- imen such as cytotoxic drugs, pro- tein inhibi- tors, or IVIg. Dr. Grando pointed out that prednisone mimics the body’s production of cortisone acetate (the adre- nal gland produces 35-40 mg/ day, which is equal to 7-8 mg of prednisone). However, when doses are too high or too low, or non-responsiveness is not recog- nized, systemic corticosteroids can become a foe.

This can lead to enhanced appetite, fluid and salt retention, emotional disor- ders, diabetes, hypertension, and more Our first international plenary speaker was Dr. Richard Groves (St. John’s Institute of Derma- tology, London). He presented on immunosuppressive agents, and when a physician should choose which one when treat- ing pemphigus and pemphigoid. Dr. Groves said the aim of adju- vant immunosuppression is to achieve great disease control with minimal adverse effects. These steroid sparing agents include azathioprine, mycophenolate mofetil, cyclophosphamide, sulfa drugs, and tetracyclines, among others. Dr. Groves continued with a detailed discussion on effective options, treatment based on the diagnosis and severity, genetics, and how adverse effects are well understood and controllable. Dr. A. Razzaque Ahmed (Center for Blistering Diseases) returned to the stage to discuss IVIg and rituximab use in autoimmune blistering diseases. These treat- ments are an area of controver- sy and lack uniformity of opinion and therapy. Dr. Ahmed talked about the IVIg treatment proto- col developed by 35 experts from the US, Canada, and Europe (pub- lished in 2003). He stressed with IVIg “there is an endpoint to the therapy…there is light at the end of the tunnel.” Dr. Ahmed stated IVIg and rituximab, alone or in combination, have shown signif- icant benefit and newer diseases’ specific biological agents will be discovered once there is a better understanding of the pathogene- sis of blistering diseases.

Next began the afternoon breakout session (workshops) focused on side effects, ocular pemphigoid, IVIg, genetics, treat- ing blistering diseases differently, and coping with pemphigus. This was followed by a short question- and-answer session with the day’s speakers (see page 14 for some of the questions). SUNDAY Sunday brought out the scien- tist in everyone as the speakers discussed updates, advances, and new therapies. Opening the day was IPPF Med- ical Advisory Board Chair Dr. Vic- toria Werth (University of Penn- sylvania) providing an update on the classification of pemphigoid. Since pemphigoid is a sub-epi- dermal blistering disease, there is a need for standard terminology and severity measures. Based on the number of studies and lack of uniformity among terminology, it is nearly impossible to compare therapeutic outcomes using sim- ple meta-analysis. Currently, sev- eral bullous disease experts are working on a Bullous Pemphigoid Disease Area Index (BPDAI) to standardize scoring and termi- nology, thus making it easier for scientists, researchers, and clini- cians to share information. How- ever, further studies are needed to validate this information, as well as validation of eye and ENT scores. Next, Dr. Ahmed introduced Dr. Grant Anhalt  as the “Grandfather of Paraneoplastic Pemphigus,” a title unofficially bestowed upon him since he was one of the first to describe it in 1990. During his talk on PNP, and using several index cases, Dr. Anhalt discussed the history, exam, and treatment plans needed to help the patients. He said most PNP cases are mis- diagnosed as chronic erythe- ma multiforme, toxic epidermal necrolysis, and combined lichen planus – and he estimates as many as 75% of cases are still not prop- erly recognized or diagnosed. Dr. Anhalt then discussed why PNP looks and acts differently than pemphigus vulgaris, and how the mortality rate is nearing 90% be- cause it is the most treatment-re- sistant disease. Dr. Peter Marinkovich (Stanford University) discussed laminins in skin diseases. Dr. Marinkovich noted that Laminin-332 is ab- sent in a severe, inherited blis- tering disease. Laminin-332 is an important adhesion molecule and target- ing the en- tire protein would cause widespread blister- ing. Therefore, selectively target- ing Laminin-332’s carcinoma pro- moting regions does not interfere with tissue adhesion. Dr. Marcel Jonkman (Univer- sity of Groningen, The Nether- lands) presented on the patho- genesis of bullous pemphigoid. While pemphigus has document- ed findings dating back to 1768, pemphigoid was not indepen- dently distinguished until the ear- ly 1950s. Dr. Jonkman discussed the histopathology, diagnostic al- gorithm, and autoantigens of BP. He also mentioned the role of IgE and how it is faintly detectable in the epidermal basement mem- brane zone (BMZ) of a BP patient, but strongly detectable in the BMZ of a skin organ culture. Our last international speaker was Dr. Michele Mignogna (Uni- versity of Naples, Italy) who presented on his 20+ years of treat- ing patients with oral pemphigus and pemphigoid in Naples. Dr. Mignogna has used a blend of conventional methods and newer strategies. He talked about the differences between treating pa- tients in the United States vs. Ita- ly.

Generally, Dr. Mignogna prefers to use rituximab (and IVIg in severe cases) where they can only be used in medical facilities. He then men- tioned that the use of rituximab and IVIg do not require insurance com- pany approval in Italy, but the ap- proval of the hospital committee, and are no cost to patients. Our final speaker of the conference was Dr. Sergei Grando, who returned to the podium to discuss new immunosuppressive drugs for blistering diseases. Dr. Grando discussed the therapeutic ladder for PV and the treatment algorithm for pemphigoid before mov- ing on to cytotoxic drugs. He referenced a study that concluded the “most efficacious cytotoxic drug to reduce steroids was found to be azathioprine.” He mentioned that all treatments have side effects, some of which can be serious, and treatments that work rapidly have the most serious side effects. Dr. Grando discussed the current challeng- es and said that current drugs suppresses all immune responses—good and bad—result- ing in unnecessary side effects. Ideally, se- lective immunosuppressive treatments that could suppress only pathogenic responses would be developed.

This year’s Annual Meeting would not have been the success it was without the present- ers who volunteered their time. The IPPF would like to thank each and every speak- er for helping make this year’s meeting the best ever!