Yearly Archives: 2009

Who am I? I’m Jack Sherman, Peer Health Coach with the IPPF. I have a degree in music education and once played bass professionally. I have packed fish, was an award-winning photographer, and worked as IT technician for several companies in the Seattle area. Currently, besides being a Peer Health Coach I have my own greeting card business, and enjoy helping others do the same. I think the common denominator with my passions are two things: creativity and helping others. That is a commonality that these very different fields have.
I have an awesome 19 year old son, Cameron, and a loving partner, Julia. I was born and raised in the Seattle area. Currently I live about 25 minutes East of Seattle in Issaquah. I love Issaquah; it’s close to the city, but also close the the mountains. Issaquah is known nationally for at least one thing: it is the corporate headquarters for Costco. I got your attention now.
I was diagnosed with pemphigus vulgaris in 2002. I wanted to become a PHC because I wanted to help others weave their way through this disease.
I was actually scared to contact the IPPF when I was early in my treatment. Once things were under control, I was ready to give back. I was so charged-up to find that there was a small — but powerful — organization dedicated to supporting me and others with this rare disease that I had to get involved! My PHC, Marc Yale, helped me become a PHC…he is an awesome guy, as is the whole team! I’m here to help and would love to answer your P/P questions. You can reach me by email at
The IPPF would like to extend our deepest Congratulations to Carolyn and the honor of being named Patron of PEM Friends. Carolyn’s work over the years has been both instrumental and inspiring to others around the world.
Carolyn received the 2011 IPPF Star Award for Patient Support during this year’s Annual Meeting in Detroit (she was unable to attend). Congratulations Carolyn and PEM Friends! We wish you many more successful years!
My name is Singe and I am a 22-year-old girl diagnosed with PV 5 years ago. I am from Denmark and there is not a lot of information about pemphigus. Because of the missing information and lack of success in my treatment, I turned to the Internet for help. It quickly became clear to me that the information that is online is mostly in English, and one of the websites that popped up on Google was the IPPF website.
For a long time I just used the website for information, I didn’t use the forums system and the opportunity for sharing information with other people in the same situation.
After a long period of downtime in my treatment of my PV, I decided to do something about it myself – I didn’t want to sit back and wait for something to happen any longer. I posted 2 or 3 short messages on the forums, and within a week I got contacted by Sharon Hickey who is a Peer Health Coach in the IPPF – and ever since she has taken me under her wings.
The 2011 IPPF Annual Meeting
It is a long way from Denmark to Detroit, and that definitely made me and my family think twice about attending the meeting! :) After some thinking, and the fact that no new attempts to treating my PV were going to happen – we decided to travel the distance and collect information.
My mother and me left Denmark not knowing what to expect from this trip – and not knowing what to get out of the Annual Meeting.
Friday evening was the first time we met with IPPF, the people in the organization and other patients. We were greeted with such warmth and kindness that it blew us a little away. The welcome reception lasted for 3 hours, and what a 3 hours! In that time I got to talk with people who have PV themselves, which is an experience that means much to me. For the first time of the 5 years I have been diagnosed with PV, I felt that someone really understood me. I didn’t have to explain how it hurts in my mouth, I didn’t have to explain all the emotions that come with being diagnosed with such a rare disease – I felt a connection with these people right away.
Friday evening was very overwhelming for me. I got to tell my story to people who really seemed to care, and knew what I was talking about. When the evening was over I had made contact with other patients and doctors.
One of the doctors I met at the annual meeting was Dr. David Sirois from New York. I told him my story, and that I had never been in remission for five years – still on prednisone, and he was so kind to take me in for a consultation the following week, when I came to New York.
The consultation was very giving because Dr. David Sirois really cared and was willing to get in touch with my doctor in Denmark. He also gave me some tips to use in my daily routine of keeping my mouth and gums clean. Finally he made a treatment plan, that I am following now – and so far it is going very well.
After this trip I almost feel like a new person. The whole experience of the annual meeting has been so informative, and I have learned that you don’t have to put your life on hold even though you have a rare disease. It is possible to get better, you just need to get the right information, and that is something the IPPF and an annual meeting can give you. It was my first meeting, and I can only recommend other patients to go – it will change your life.
I would like to thank all those who attended in the meeting in Detroit, for making my trip so positive and giving. A special thanks to Dr. David Sirois for taking your time to see me and to Sharon Hickey my dear Peer Health Coach.
“I couldn’t have done it with out you”.

Signe Horn Thomsen

Our Director of Communications, Will Zrnchik, created this great new logo to identify the relationship between the KJT Group (a professional, medical, research firm and the IPPF on a project currently undertaken by the IPPF Board of Directors and IPPF Medical Advisory Board) and the IPPF to accurately and scientifically document the pathway(s) to an accurate diagnosis of pemphigus or pemphigoid. We hear from so many folks out there about their scary and painful path to finally getting diagnosed, including, sometimes, diagnoses that are wrong or people shuffled off to some other doctor (or no one at all) while the disease blows out to critical levels before someone finally thinks of P/P, or before neglect results in a much more difficult and damaging treatment course.
But, in order to seek funding to study a problem, donors and grantors require that one can accurately document the “need”, we need the evidence of this problem and, while we are at it, we are seeking answers to where/why doctors are making these errors so that we can target our education at critical “opportunity spots” where things go awry — for example where doctors may be lacking information on effective visual/clinical observations or use of appropriate diagnostic tests, or not have resources for an appropriate referral.
Once again WE NEED YOU! In these extremely rare diseases, for us to get accurate, significant data it requires that virtually everyone participate to help everyone. This is sort of the other side of the coin from the Power of One, “One” won’t do it this time; now we need the power of 100. We must document 100 “paths to diagnoses” in our online survey. The trick!? We can only survey folks who were diagnosed in the last 18 months, to prove that these delays are a current and ongoing problem.
If you have been diagnosed in the last 18 months we need your help. If you got a personal link, please do fill it out right away (we’ll stop re-“inviting” you if you do it!). If you did not get a link, but fit the criteria, please sen Will an email at will@, or 916.922.1289 x 1003 and he will send you one.
Together we can gain greater information and have a larger impact. Let’s!
Usually after the Annual Meeting as the days blend into Summer, we have a period of quiet time at the office to clean off our desks, unpack boxes and follow-up on all the new opportunities generated from the meeting. This year, there were so many new opportunities there was little time to “dig our toes in the sand”, although Will did manage to take a break to get married and I vacationed away my “day to get a year older.”
Here’s what we’re juggling:
Already it’s time to prepare for the 2012 Annual Meeting. Save the date for BOSTON May 18-20, 2012, and see more info at Terry Wolinsky-McDonald, Sonia Tramel, Greg Wright from the BOD, and Will Zrnchik are working closely with Dr. Razzaque Ahmed and the Blistering Diseases Clinic and other area leaders to host one of the largest and most informative meetings ever. If you have skills that could add to the organization or fundraising for this meeting, please contact me at
Your Board of Directors approved a budget for a research study of delays to diagnosis. It’s a short online survey to document where people go when they have symptoms and what doctors are doing and saying — the ones that go awry and the ones that help. This will allow us to identify key areas where education and outreach can move the lever to better diagnosis and allow us to apply for grants to fund this education. If you were diagnosed within the last 18 months please answer this survey (see page 3) — there are likely 300 new P/P patients a year in the US and we need over 100 to be secure in valid survey results.
I have been working to develop inroads in the Pharma industry, attending several drug development conferences and having meetings with many pharma companies to generate research opportunities based on the data in our Registry and opportunities for basic science through blood and tissue donations. In addition I have been speaking with Medical Advisory Board members and small bio-tech firms to generate interest in research projects on drug compounds that my be effective with disease mechanisms that cause P/P.
I’ll be off again shortly to an Orphan Drug Industry Conference and then to Washington DC to advocate with the NIH ( and NIAMS ( for increased funding in the orphan and autoimmune areas. In the meantime, contact Will at the office or Marc Yale and his team of Peer Health Coaches if we can assist with anything.
Happy Fall,
Have you ever had a question about pemphigus or pemphigoid, a certain medication, or a treatment protocol and you just can’t get a straight answer from your physician? How about wanting to know more than you already do about your disease and how to live with it? Well, the IPPF has a way to help: our FREE Town Hall Conference Call series.
The IPPF has now conducted three of these calls and feedback has been tremendous! The sessions are free, feature a leading P/P physician from the IPPF, and are done in a Q&A format moderated by IPPF Senior Peer Health Coach Marc Yale.
The calls last one hour and callers are able to ask the doctor a primary question and a follow-up question before allowing the next caller a chance. Callers may enter the queue as often as time allows, but should keep in mind the goal is to allow many people to ask questions. Often, hearing other questions will answer some of your own.
Additionally, questions can be sent to during and after the session. If you miss a Town Hall or want to re-hear the session, audio files are available in MP3 and .zip format at about 48 hours after the call has ended.
If you have questions about the Town Hall Conference Calls, want to recommend a speaker or an idea, email or call (916) 922-1298 x1003.
Over the next several months, I got progressively worse. Mouth blisters continued to appear after I ate, I had constant chronic fatigue and swollen glands. My mouth erupted with white thrush-like growths in July 1995 and the first skin blister appeared in September. I had consulted many physicians and received many diagnoses and treatments for what was happening to me. None of the treatments provided any benefit or relief.
In November 1995, I was admitted to the hospital with what appeared to be second degree burns over 30%-40% of my skin surface. The tissue from my cheeks inside my mouth would completely exfoliate after each meal. I could only open my mouth about ¼ inch and had blisters inside my nose and sinus cavities. The pain was excruciating and I could barely eat or breathe. I was a walking skeleton, weighing about 100 lbs, and the blisters on my back ‘glued’ me to what-ever surface they touched. I was too weak to walk and had to use a wheelchair.
A diagnosis of pemphigus vulgaris was confirmed by Immunofluorescence of a punch biopsy. My initial dose of Prednisolone IV was 180mg per day. I walked out of the hospital nine days later on a daily dose of 100mg of Prednisone, oral Novocaine, diflucan and an anti-biotic. That day marked the beginning of my journey to understand why this was happening to me.
The first thing I did was take a lesson from the clients of one of my previous employers, a social service agency. Instead of using the term “Victim of Pemphigus” or “Sufferer of Pemphigus,” I labeled myself “Living With Pemphigus.”
This small change of language changed the paradigm. I was now empowered to conduct my own research. My now wife and I snuck into medical libraries in order to learn as much as we could (lay person’s are not allowed in medical libraries). During my Prednisone induced sleepless nights, I kept myself busy by reading & learning as much about Pemphigus as I could (and compulsively reorganizing our kitchen).
The second thing I did was to set a goal. I decided to be “Pemphigus Free by 2003.” The significance of 2003 was that it was seven years in the future (a new-age medical belief that the cells of our bodies regenerate every seven years), and “free” rhymes with the number “3.”
The third thing I did was adopt a belief that I was not pre-destined to develop pemphigus and my immune system was not my enemy. Instead, I choose to believe that my immune system was on my side, but had become misdirected or fooled into attacking my own tissue. Instead of viewing it as the enemy needing to be suppressed, I viewed it as troubled. It needed guidance and support.
I began experiments with many modalities of medicine. Rather than list all of the paths I took and experiments I tried, most of which were dead ends, I’m going to focus on the path that lead me to where I am today, in 2011.
The first clue, to me, that specific foods may be a key to understanding, came in a TexMex restaurant a few weeks after I was released from the hospital. At that time, blisters would form in my mouth within 5 minutes of when I started to eat, and last for about 2-3 hours. That evening, the blisters formed as usual and then disappeared in about 20 minutes. I was able to repeat this phenomenon, but was not able to figure out why it happened or isolate the food that was responsible. I subsequently abandoned that as a possible clue.
Jumping forward a couple of years to 1997, I’m now living in Eugene, Oregon. Eugene is much more vegetarian friendly that Houston, and also has many more styles of medicine available. My pemphigus was fairly stable at a dose of 20-30 mg of prednisone every other day.
Among the many doctors I visited, one was an MD who specializes in chronic illness. He examined my blood under a Dark Field (Black Light) Microscope. The exam revealed, among other things, that my blood cells were agglutinating, or sticking together, much more than those of the average person. This physician’s method of treatment for this condition, massive doses of vitamins, provided no benefit to me.
Several months later, my wife and I attended a seminar that was supposed to be about the diet modality I was following at the time, raw food vegetarianism. Instead, the speaker talked about a diet based on blood type. At my wife’s insistence, I reluctantly purchased and started reading yet another book that I was sure would lead nowhere. The byline on the book was about weight control, and I already weighed a whopping 95-100 pounds (I’m 5’7″).
The book was called “Eat Right for Your Type” by Peter D’Adamo, N.D. I can still vividly remember reading and re-reading a paragraph in the book that describe how foods cause agglutination to happen. The part that fascinated me was the idea that different foods cause agglutination in people based on their blood type. In short, it is believed that foods that are harmful to me and cause agglutination can be very healthy for someone else who has a different blood type.
Now, all of my preconceptions about diet, health and disease were about to be stripped away.
In June 1997 I decided to try eating according to Dr. D’Adamo’s theory. One month later, I noticed that I was ‘feeling’ better. I had slightly better muscle tone; my digestion was improving and the chronic fatigue I had lived with for the last several years would occasionally lift. The path of improvement continued and a couple of months later I reluctantly introduced meat to my diet. It seems that as a vegetarian, I was eating a very healthy diet, just not healthy for me, according to D’Amado. My blood type is O, and stereotypically speaking, people with this blood type do not thrive on a vegetarian diet.
Over the next year and a half, I continued to improve and started gradually weaning off prednisone. I took my last prednisone pill in October 1998. Although my regular physician declared pemphigus “resolved” in February 2003 (I realized my goal), I still have the antibodies in my blood. If I stray from my blood type diet too often in a short time period, I’ll get an occasional blister in my mouth. It serves as a reminder to get myself back on track and eat foods that are healthy for me. The blisters normally disappear within a day or two. I have not had any skin lesions in over 12 years.
I now live a full and vibrant life. I am much healthier, in general, than I was before that first blister appeared. I am parenting my now four-year-old son who loves sports and is very physically active. I am also physically and intellectually active. I do have aches and stiffness, probably associated with both being 50+ years old, a veteran of prednisone and decades of an unhealthy lifestyle. I have avascular necrosis (dead bone tissue) in my shoulder, several benign osteoma’s and high lipidemia that are all probably side effects of prednisone. They require ongoing medical monitoring, but no treatment at this time. The one thing I do not do is worry about when or if another pemphigus lesion will appear on my skin.
If I had never had pemphigus, or if I had a more popular disease that I believed would be ‘cured’ by modern medicine, I would never have engaged in a period of self discovery that led to where I am today. While I wish that I could have learned these lessons in a gentler and less life threatening way, I am truly grateful for the role that pemphigus has played in my life.
Steven Shapiro is currently the Computer Services Manager for the Office of Research Services and Administration, University of Oregon. He lives in Eugene, Oregon with his wife Sharon, son Daniel, a dog, 2 cats, some chickens, and a huge garden where he can often be found planting, pruning or watching his son chase the chickens.
by Clare Trott, PEM Friends
Solihull is a town in the West Midlands with excellent transport links and a large shopping centre containing the John Lewis Department Store. Once again this provided an excellent setting for the PEM Friends February lunch. The store’s restaurant, “The Place to Eat,” had one corner set aside for the PEM Friends group.
The 11 people who attended came with a wide range of issues and experiences. Some had been to many such lunches and others were newer friends. So it was good to renew old friendships and lovely to forge new ones. There was the usual genuine welcome and buzz of friends chatting and swapping stories and experiences. The good food, of course, added to the atmosphere.
Carolyn Blain founded PEM Friends to provide support through friendship. Tracey, who was unable to join us, says Carolyn is “the glue that holds us all together.” It is also about knowing there is support and light at the end of the tunnel, as well as the sheer sense of sharing. It is often said that those who eat together, stay together. Our lunches certainly enrich our community and better equip us to face the challenges of health.
Dr. Karen Harman, Consultant Dermatologist at Leicester Royal Infirmary, graciously gave a considerable amount of one-to-one time where we were able to discuss our concerns and seek advice. Her gentle listening – but informative manner – made this a very precious time. We all felt privileged and special. Carolyn then presented Dr. Harman with a Marks and Spencer gift voucher, although what Dr. Harman gave to the group is priceless.
It was, indeed, a wonderful day, in which we certainly received help, advice and guidance as well as friendship and “shared an uncommon bond.”
by Clare Trott, PEM Friends
I am writing this on behalf of all the PEM Friends in the UK, and further afield. In fact, our community extends beyond us patients to highly respected medical practitioners and many others. I want to pay tribute here to the amazing work of Carolyn Blain, founder of PEM Friends.
The aim of PEM Friends is to offer support through friendship and the group has done so much more for all of us. Her vital work has provided encouragement, support and guidance which she has extended to each and every one of us. Her dedication cannot be underestimated. Never taking no for an answer and working passionately on our behalf with the leading professionals, she always made people take notice and has put pemphigus and pemphigoid firmly on the health agenda. Carolyn has given so much of her time to support us, whether it was a PEM Friends lunch, one of the very special weekends at her home, an e-mail, a call, or so much more.
Carolyn, you be must so proud of what you have achieved. A huge thank you for the love and support you have given us. We couldn’t have got through those times without you.
Each year the IPPF travels to a different location to bring some of the world’s leading P/P physicians and researchers together with patients and caregivers for a weekend of disease education and fellowship.
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
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 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.