This year’s event was held May 20-22, 2011 at the MotorCity Casino and Hotel in Detroit, Michigan. Events such as this would not be possible without the support of our partners and the IPPF is proud to have this year’s Annual Meeting sponsored by AxelaCare, Crescent Healthcare, Centric Health Resources, and BIOFUSION. Product samples were also provided by Alwyn Cream.
Before the first presentation was given, members of the IPPF Board of Directors, staff, and Peer Health Coaches met for updates, training, and team building. Friday evening’s Welcome Reception culminated with a drawing for three sets of tickets to see Bill Cosby perform live. The winners were Peggy Linaras, Alan Papert, and Scott Oling. Congratulations to each of you!
Saturday was filled with presentations, breakout sessions, and Q&A with the experts. The event started with a welcome from Dr. Dave Sirois (President, IPPF Board of Directors and Medical Advisory Board member) and Molly Stuart (CEO of the IPPF). Afterwards, Dr. Animesh Sinha opened the first plenary session, Biological and Clinical Aspects of Disease. This session focused on the science of P/P and was designed to help build a basic foundation for patients and caregivers to build on during the meeting.
Dr. Sinha introduced long-time Annual Meeting presenter Dr. Grant Anhalt with an Introduction to Blistering Disorders. He takes the dynamics of the disease and breaks it down into simple to understand terms.
Next, Dr. Sinha took the scientific approach and presented on the Genetics and Immunology of Pemphigus. Dr. Sinha focused on how scientists and researchers look at the basic composition of pemphigus and pemphigoid at the cellular level. Joining Dr. Sinha was his wife, Dr. Kristina Seifert-Sinha and a team of medical students from Michigan State University. Dr. Sinha’s team conducted a blood draw for patients and their families to help with his research.
Rounding out the opening session was Dr. Neil Korman and the Clinical Variation and Course in P/P. Dr. Korman enlightened attendees on the different aspects of the diseases and the need for specialists to focus on these diseases to reduce diagnosis times and increase the quality of care. He also mentioned that it seems fewer medical students are entering the P/P field (bullous and blistering disorders) while many of the “old guard” are approaching retirement. This point helped drive home how one person might be able to persuade one student to focus on P/P who one day may find a cure. Yes, The Power of One.
Groups then split into small breakouts. Dr. Sirois led an informal discussion on the Oral and Dental aspects of P/P. This session covered everything from early signs to safe and effective flossing techniques. Dr. David Fivenson led a session on Bullous Pemphigoid, the first truly pemphigoid-specific session at one of the Annual Meetings. Dr. Fivenson talked about the variations of pemphigoid, clinical presentation, treatment, and individual care. Dr. Stephen Foster’s session on Ophthalmic Disease covered how P/P affect the eyes and offered attendees helpful information they can use themselves and share with their treating physicians.
The Awards Luncheon’s keynote speaker was Rebecca Strong. Her talk, titled The Power of One, shared how she took the words of Dr. David Sirois at the 2010 Annual Meeting: patients need to be the ones to educate others about P/P – including educating doctors. In February 2011, Rebecca did just that. Rebecca shared her story with 212 dental students at the University of Michigan’s School of Dentistry explaining her P/P journey from a lengthy diagnosis to the effects it has on her life. Rebecca felt her reward came when the UofM students laughed, cried, and asked question after question about P/P and her experiences.
Her presentation kept the audience laughing, crying, and inspired to keep the patient in mind and search for a cure. Rebecca left the stage to a standing ovation.
Rebecca has now become a P/P champion and has offered to help anyone who wants to learn more about talking to others. Ask her how you can help by emailing her at firstname.lastname@example.org.
Over dessert, CEO Molly Stuart took time to recognize those who have contributed to the IPPF Community during the past year during the IPPF Annual Awards Ceremony.
The IPPF STAR Award for Education went to Rebecca Strong for educating future dentists. The IPPF STAR Award for Outreach went to Peer Health Coach Susan Golzales-Thomas for voluntarily staffing an IPPF booth at several local events in her hometown. Susan not only spread the word on pemphigus and pemphigoid, but made contact with a couple of patients, and raised funds to support the Foundation’s programs.
The IPPF STAR Award for Patient Support was PEMFriends Founder, Carolyn Blain. Carolyn is a long-time member of the Email Discussion Group where her first-hand knowledge has helped newly diagnosed patients for many years. Carolyn recently turned over the reigns of the UK’s PEMFriends support group after several successful years of patient, caregiver, and provider education and awareness (see related articles on page 6). UK P/P folk can now contact Clare at email@example.com for support.
The IPPF Doctor of the Year Award recognizes research and treatment that has bettered the lives of pemphigus and pemphigoid patients around the world during the previous year.
The 2010 Doctor of the Year was Dr. Sergei Grando. Dr. Grando is a Professor of Dermatology and Biological Chemistry at the University of California–Irvine, and Vice Chair of the IPPF Medical Advisory Board. Dr. Grando played an instrumental role in putting together the most influential and forward-reaching pemphigus and pemphigoid scientific meeting in history, the 2010 JC Bystryn Pemphigus & Pemphigoid Science Meeting: From the Bench to the Bedside. Over 130 scientists, researchers, and physicians from around the world participated in discussions on new and emerging findings, treatments, and possibilities.
The results of this meeting were recently published in the Journal of Investigative Dermatology. This meeting will serve as the foundation for several future meetings. that will reshape the face of P/P research and treatment.
The Founder’s Award is given in recognition of an individual’s extraordinary contributions to the growth and future of the IPPF.
The Founder’s Award recipient was Dr. Terry Wolinsky-McDonald. She has been active in the P/P community since the days of the Pemphigus and Pemphigoid Society where she was a board member, and has been a member of the IPPF Board of Directors since 2005. Dr. McDonald is a regular contributor to the IPPF Quarterly and her Psychologically Speaking column is one of the most read sections of the journal. She is also a contributor on the IPPF Email Discussion Group and frequent presenter at our Annual Meetings. The efforts of Dr. McDonald have helped the IPPF become a stronger, more patient-centric organization and establish a solid foundation for future growth.
The IPPF would like to congratulate all of our award recipients for their singularly distinctive accomplishments, and their collective efforts to better the Foundation and the lives of patients around the world.
After lunch, attendees broke up into the second group of breakout sessions of the day. Dr. Razzaque Ahmed’s presentation, Below the Belt, continues to offer information and advice to those with P/P in not so visible areas. Michelle Greer from Crescent Healthcare provided listeners with plenty of IVIg information and safe home infusions. And for those with sights on the future, Dr. Anhalt talked on New Biologics. Dr. Ahmed and Michelle have been instrumental in advocating IVIg an as effective treatment for P/P.
Returning to the main room for Plenary Session II, Treatment and Management of the Disease, Dr. Fivenson began with a Treatment Review that covered the various types of treatments currently in use and those that are on the horizon. Dr. Victoria Werth then presented on Side Effects of Common Medications. Her talk focused on the many complications that P/P patients experience while taking a myriad of drugs and how to better manage side effects when they do occur.
During Recent Successes & Strategic Directions, Dr. Sirois and Molly covered the advances the Foundation has made over the past year, and discussed where the IPPF is heading. Information on the Registry, Health Management, and Definitions Consensus gave a history and status of our current programs. Discussion on the future of the Registry and the analysis and use of the data encouraged attendees to support the research any way they can. They future of P/P is not only in the lab, but in every patient out there.
The formal program for Saturday ended with a panel discussion featuring the day’s presenters. Afterwards, attendees were invited to a Mixer sponsored by AxelaCare in Detroit’s acclaimed Amnesia Lounge. The club was all IPPF and attendees enjoyed a view of the Detroit skyline (see picture on top of pp. 4-5), delicious hors d’ourves and cocktails, and wonderful conversation and friendship building opportunities. Even though Brian Cleary was unable to attend, his colleagues (Jim Kelly, David Schaefer, and Garth Groman) made sure any and all questions were answered and everyone had a great time! Thank you AxelaCare for the wonderful evening!
After a good night’s rest, attendees joined Peer Health Coaches Marc Yale, Yvette Nachmias-Beau, Susan Gonzales-Thomas, Sharon Hickey, and Jack Sherman, to start off Sunday morning. The Patient’s and Caregiver’s Forum provided everyone a chance to not only meet the IPPF’s PHCs, but ask them questions and get answers from a patient’s perspective. Next, during The Power of One: Advocating Works!, Rebecca Strong and PHC Yvette Nachmias-Beau spoke on how they went about working with universities and how they prepared for educating medical professionals in training on P/P from a patient’s point of view.
Plenary Session III, Next Steps, was all about the future. PHC Marc Yale took the stage and spoke about the Registry and Health Management Program Updates. He encouraged attendees to not only participate, but spread the word and get everyone affected involved. Dr. Werth then provided a Clinical Trials Update and took questions from the audience. Following that, Dr. Ani Sinha officially concluded the 2011 Annual Meeting by announcing the IPPF’s 15th Annual Patient/Doctor Meeting in Boston May 18-20, 2012.
The IPPF would like to thank everyone who attended, our invited speakers, those who volunteered all over the event (Liz), and our generous sponsors.