Monthly Archives: September 2009

Nestled in the pristine Swiss Alps, the Hotel Allegro in the city of Berne, Switzerland was the location for an international meeting discussing all aspects of pemphigus. The meeting consisted of 3 days of intense scientific discussions. The meeting was co-sponsored by the IPPF and many members of the IPPF Medical Advisory Board were present. Included were Dr. Jean-Claude Bystryn, NYU Dermatology; Dr. Sergei Grando, UC Irvine; Drs. John Stanley and Victoria Werth, UPenn; Prof. Michael Hertl, Phillips Univ., Germany; Prof. Marcel Jonkman, Univ. of Groningen, Netherlands; Prof. Pascal Joly, Rouen Univ., France; Dr. Masa Amagai, Keio Univ., Japan; and Dr. Grant Anhalt, Johns Hopkins University. Ms. Janet Segall was there representing the patient’s perspective and the IPPF.

What happened to the lazy days of summer! After slicing and drying almost 300 pounds of tomatoes from my garden, it is a happy frenzy when I get to the IPPF office – which is, at least, air conditioned. Will has been lifting the heavy weight of building an automated system that delivers our direct patient support in a much more streamlined way. Now you can call your Peer Health Coach directly, no matter where they are. In addition, we have added mechanisms to ensure timely follow-up with requests that come from the website, Forums, phones, or emails, and even better, to request, from those helped, feedback on our services and suggestions for improvements.
Part of this technology improvement has gone to strengthen our data registry. We now have, in just slightly over one year, 171 (as I write this) people surveyed through our Health Management Program. This means that we have what is close to statistically significant data on the natural course of P/P disease and reliable evidence of treatment outcomes and side-effects. Finally we can provide that data (all de-identified and anonymous) to doctors to develop “Best Practices” standards for treatments. This allows doctors not familiar with treating P/P to have some confidence in the course of care they offer and, in the anticipated success of different options. Most importantly, having large scale information on your illness experience, treatments, outcomes and complications will allow the IPPF to more effectively pursue policy and discovery opportunities that improve treatments, outcomes and your quality of life. Watch for more news on the registry environment and your vital participation….having information from a large number of patients will optimize the accuracy of our insights and our effectiveness in illness advocacy. In addition, we can give data to researchers to identify trends and potential mechanisms to manage or cure the influence of those rogue antibodies.
We still need your help. Having 500 patients surveyed provides a much richer set of data points to enhance confidence in the choices that doctors and researchers make about fruitful areas of pursuit (we have over 3,500 patients that CURRENTLY use our services). We need your data. To this end, Will, again is working his wizardry to put our survey’s online so that even people who do not want or need the added comfort of a personal “Peer Health Coach” can still contribute to this wealth of knowledge about these wildly misunderstood diseases. Please, call us or go to the website and indicate that you want to participate in the “HMP” Registry data collection to help advance a cure. You can request information at
For those of you who truly appreciate the opportunity to connect to a Peer Health Coach, we have expanded our program and now have numerous coaches, located across the country, including both men and women coaches and coaches with different forms of P/P – so you can always connect with what you need. All Peer Health Coaches are P/P challenged and have participated in and been certified by an outside training program to provide valuable P/P wisdom as well as advice. If you would like to talk with a Peer Health Coach, you may submit a request on the website, or call the office and choose Option 2. You will be provided a Coach based on your location and disease experience – you can always switch if you want — they will collect your data and discuss with you any areas of interest or concern.
We also especially need you to support the IPPF in 2009. The conference of P/P luminary medical professionals to define the “Best Practices” in treating this disease – which will help, literally hundreds of P/P next year alone – has a budget of nearly $25,000. The money will be spent to gather data, evaluate completed studies and to produce and publish a scholarly paper as well as provide the results to ALL of the practicing “main street” medical-dermatologists in the US. Fortunately, the IPPF has been honored in 2009 with a Matching Donation Campaign (see details on page 11) which allows every dollar donated this year to do twice the work and make twice the progress. We know this is a tough economy for everyone, but we are anxious to continue our momentum in making a real difference in the course of this disease; Please give what you can, or give again if you can.
After the registry contains robust numbers of patient data we have plans to implement a tissue collection bank to augment the data report with actual samples of blood, tissues, etc — as the foundation for medical trials — more on that next time.

PS: Make plans now to join us in Philadelphia, PA April 30-May 2
for the 2010 Annual Meeting. And let us know if you have any
connections in Philly that could help make it a great(er) meeting!!

Janet said, “I thought I would try to start the Foundation. Unfortunately, I was not prepared for the enormity of the task, and found it all quite over-whelming; so I gave it up; though I continued to look for others and gather information.” This was taken from The PV Foundation News, Volume 1, Issue 1, March 1995 – all five pages.
Nearly seven years before starting what would become the IPPF, its founder, Janet Segall, walked away because the task overwhelmed her. These diseases can do that to a person – overwhelm them. But she did find a way.

I woke up one morning to say, “I’m going to do it.”

Where would patients be today had Janet not found the courage to take pemphigus on full force But Janet was compelled to make a difference – and what a difference it was!
On July 31, 1994, the PV Foundation’s Board of Directors gathered in San Francisco. There, five people met to lay the foundation for this Foundation. Their first official meeting was in February 1995 after becoming a 501(c)(3) in October 1994.
There will always be adversity to face regardless of the reason; change is inevitable in life and unless a person can accept and overcome it, they will be consumed by it. Janet continues her efforts to champion change, advocacy, patient rights, and peer support on a much broader scale.
True to her original commitment, Janet continues to counsel pemphigus and pemphigoid patients, and now she will also offer her counseling skills to those with other autoimmune diseases.
The work Janet did with the Foundation was life-saving to thousands of people around the world. Statements like, “I would be lost without Janet and the IPPF” and “Janet saved my life” are commonly heard around the offices, on the Community Fourms, and in the Email Discussion Group. Luckily for the IPPF, patients continue to benefit from her knowledge and experience.
Janet is in the early stages of a new startup venture to educate and counsel patients regardless of their disease. Janet is scheduled to take additional classes that will add to her repertoire of skills and further benefit the patients.
What started as one woman’s journey for help became a unified effort of hope; a common hope…an uncommon bond. All of us honor Janet for her courage, wisdom, perserverence, and committment to our cause: finding a cure.

Last year I signed up for the IPPF’s Health Management Program with the idea that I would benefit the Foundation with vital information and as a result I would learn more about my disease. A couple of weeks ago a thoughtful e-mail arrived from my new Health Coach-Marc Yale. I had seen Marc on stage at the IPPF Annual Meeting receiving an IPPF Star Award for Patient Support. A couple of days later, he called to follow-up on my health, current progress and we had time to discuss treatment options.
As a patient with Bullous Pemphigoid, Marc is extremely knowledgeable thoughtful and caring. As a member of the Board of Directors, I appreciated his professionalism and was pleased that it has been so easy to participate in the HMP. If you have not participated yet be sure to contact the IPPF office. You, as well as others, will benefit from the experience.

Lee A. Heins

Secretary & Treasurer

IPPF Board of Directors

As a member of the IPPF BOD and one of Janet’s longest standing supporters, I wanted to relect on where Janet brought us from — and to.

Janet Segall has had many outstanding accomplishments since she started the Foundation in 1994. In fact, it could be said that it was a textbook organizational growth plan. In that first year, Janet was a single parent from San Francisco with a teenage daughter, Tina. Janet had been living with Pemphigus Vulgaris for 10 years and could not find the needed support anywhere.

With donations from family and friends, she started a non-profit 501(c)(3) organization called the National Pemphigus Vulgaris Foundation (NPF), later International Pemphigus Foundation (IPF), and most recently the International Pemphigus Pemphigoid Foundation (IPPF). She worked hard to form a Foundation Board of Directors — which has grown to 12 members. Janet then started networking with the best dermatologists in the United States and Canada (and later the world) with the help of Dr. Grant Anhalt of Johns Hopkins University and Dr. Jean-Claude Bystryn of New York University. A Medical Advisory Board was soon formed which now has 20 members from all over the world.

Physicians and pemphigus researchers started talking to each other with her help and have developed protocols for drugs such as Imuran, IVIG and Rituxan. With Janet’s encouragement, many of our pemphigus and pemphigoid physicians referred their patients to the Foundation. Janet was an early supporter of the internet which provided a fantastic tool for patients to discover the organization and communicate with each other via an e-mail list server.

A quarterly newsletter provided vital information to patients and physicians. Patient Support Groups were started in Los Angeles, San Francisco, New York, and Toronto with Boston, Philadelphia, England, Israel and Italy soon following. The next step was an annual meeting. The Annaul Patient/Doctor meetings connect patients and caregivers with the latest information. The IPPF also participates with major dermatology organizations as well as with the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), International Allince of Patient Organziations (IAPO), and the Coalition of Skin Diseases (CSD), to name a few. Our organization has even spoken to members of the United States Congress on autoimmune diseases and health care funding.

Today we have outstanding partnerships with many major drug and healthcare companies and our partnerships with them have helped research and patient profiling. The Foundation’s budgets grew from $10,000 in its first year to a budget which now provides for an office in Sacramento, CA with an outstanding staff which serves and provides support to patients from around the world.

Most importantly, Janet has made life better, healthier and happier for countless people worldwide. As the ultimate tribute, Janet found the right physicians at a critical moment and saved MY life. To show my gratitude and offer guidance of the IPPF’s future, I serve as Secretary/Treasurer on the Board of Directors. I can think of no better way to show my appreciation to Janet and the Foundation than to donate my time to making the IPPF better each and every day.

Thank you Janet, for your unselfish gift of vision, support, and sacrifice to pemphigus and pemphigoid patients!

Lee Heins

Director, IPPF