Category Archives: Issue 58 – Fall 2009

The IPPF is pleased to welcome the newest member to our Board of Directors. Mindy Unger is a mother of three children, ages 19, 16, and 9 and is actively engaged in a number of philanthropic activities.

Mindy graduated from Binghamton University in 1982 with a B.S. in Accounting and received her CPA. She was an Auditor with Deloitte Haskins and Sells (now Deloitte and Touche), a Vice President at First Chicago and the Director of Accounting at Clarendon Ltd.

As a Board Member of Bet Torah, where she is currently Chair of the Ways and Means Committee, Mindy is responsible for more than doubling the fundraising efforts of previous years. She is a founding and active member of the Neshamot Fund, a Westchester Women’s Impact Philanthropy Group. She is also actively involved in various volunteer positions, from monthly visits to the Pleasantville Cottage School, a residential treatment center caring for 200 emotionally troubled youngsters, to being treasurer for multiple school plays.

Mindy is excited about using her financial, organizational, and fundraising skills to benefit the IPPF. Having the disease herself, she is most anxious for the IPPF to continue developing educational programs and research efforts.

The IPPF has always been instrumental in supporting clinical and scientific meetings. In addition to supporting the American Academy of Dermatology’s (AAD) Symposium on Autoimmune Blistering Diseases, the IPPF is co-sponsoring the International Pemphigus Meeting in Bern, Switzerland in June 2009. This meeting will gather the finest minds in the world studying and researching pemphigus.

Subjects include: models in pemphigus, cell signaling, immune responses, unconventional therapies, and how stem cells might play a part. Janet Segall, IPPF Director of Patient Services & Education, will add a human face to the ramifications of these diseases among the scheduled scientific discussions.

The hope for better results comes from the work of people speaking and attending this meeting. The IPPF is proud to partner and co-sponsor such an important discussion and thank all those involved. The registration deadline is March 31, 2009. Anyone interested in attending this meeting should register at

Painful and scary symptoms no one seems to be able to explain or understand; a diagnosis you have never heard of before; understanding the actual illness; treatment options  most of which have not been FDA approved or may be considered experimental; side effects to consider; possible remission but no cure. . . Just trying to take in all of the above is totally overwhelming. Now, how do you explain it to others

Before you’ve even adjusted you will be asked by others how you are or what you have. How do you answer these questions You will try to find a relatively easy to understand explanation (e.g. My body’s immune system is not working correctly; it is attacking my body.)

I find that some people are even confused on the difference between autoimmune disease (AID) and acquired immune deficiency (as in AIDS). [See Terrys full article about AID vs. AIDS on our website at or call 916.922.1298] It is disturbing when others are scared that they will contract pemphigus or pemphigoid from us.

While there has been education about MS, Lupus, Arthritis and other autoimmune disorders, the more rare ones remain a mystery  and a scary one at that. From a psychological point of view all of this puts people with these rare autoimmune diseases at a distinct disadvantage. Now you need to cope with the fears of others as well as your own. Like most fears, they can often be addressed with a good dose of information.

Personally, I find it easiest to just say pemphigus is an autoimmune disease like Arthritis or Lupus. Since I have arthritic hands I can just put out my hand and say it is not a disease I can give anyone any more than I can actually give someone Arthritis. If people want more information, I usually just refer them to the website. Those who go learn a lot very quickly. Education is part of the mission statement of the IPPF. From the website you can get and give out key points to raise awareness and minimize fear in others.

If, as a patient, you feel compelled to further explain your particular autoimmune disease, a few copied/printed pages may suffice, or you can write a succinct explanation on index cards which can easily be carried around in a wallet (or use the sample at the left).

By the time this article is in print, I will have presented at the University of Pittsburgh Dental School for dentists receiving continuing education credits. I am not an expert on dentistry, but I understand the challenges of this disease and I have help and support from Janet and my fellow Board Members including Dr. David Sirois. I have made this opportunity happen through sheer persistence. I feel very strongly about patients getting their diagnoses in a more timely fashion.

I truly believe we are all capable of making a difference for others by giving our time and energy to help people — both doctors and our community — become more aware of diagnoses and challenges. Whether it is time, money, or other resources, every little bit helps! My hope and belief is that we can all touch others in positive ways and that whatever we are able to contribute of ourselves will make a difference.

A member of our Board of Directors and I attended the National Health Council’s (NHC) annual meeting February 11-13, 2009.The National Health Council sets operating Standards of Excellence for its members  such as the IPPF and over 50 of the nations leading patient advocacy groups  regarding budgets, policies for working with pharma companies and expenditures. The NHC advocates in Washington, D.C. and is the only organization of its kind that brings together all segments of the health care community to provide a united voice for more than 100 million people with chronic diseases and disabilities and their family caregivers.

When the economy was crashing, I held my first fundraiser/awareness gathering knowing that a majority of the invitees were retirees. I’d never done anything like this before, but people who know me know when I believe in something, I am clear about it. I believe:

  • in the IPPF and our ability to improve the quality of life for those who suffer from P/P
  • in science, research and the art in between to craft a solution to the rise of autoimmune diseases as a whole
  • in the generosity of others and their interest in investing in making our world a better place

Ultimately, I know that most people are like me. When I see suffering, I need to help and I feel privileged to do so. Let me make you some chicken soup because it might warm your belly, but it certainly feeds my soul.

So my Mom invited scores of friends who might be interested. I speak publicly as a teacher-librarian; but in this role, the challenge was to talk about my own struggle, not how to search or evaluate. I lack confidence in that, but did my best. IPPF BOD Member Marcia Pepper told her story and IPPF BOD President Dr. Dave Sirois filled in the medical blanks.

Sixty attendees learned about P/P. In the disparate crowd, one woman’s son had pemphigus, one woman’s husband (a doctor) had written about a pemphigus patient over 20 years ago and one woman had a friend who had died of the disease. By the time we parted, this was a gathering of family now educated about the disease and the hardships of those suffering chronic illness exacerbated by rarity and ignorance. It was the first time most heard the term Ultra-Orphan.

I asked attendees to think about the cause not rush out and donate, but to consider it. I was touched by the response. Beyond the money donated to the IPPF in the days to follow, the outpouring was amazing. Every time my Mom goes to the store, someone asks about me or tells a story of someone who knows someone who…

I want to thank you. Reading this, you are a fellow patient, a doctor, or an interested friend or donor. You inspired me to overcome my fears and branch out so I could teach others about P/P. Anyone can do that. And I encourage you to try something new in a year when every non-profit is predicting dismal budgets. You have the power to change the world, one person at a time. Host a game night. Go to lunch with a friend and have them pass a pamphlet on to a doctor or dentist instead of tossing it. Like the butterfly whose flapping was felt in far off lands, make connections. They count.

My Mom recently told me the story of an attendee who was talking with a friend in Israel. The Israeli was suffering from a rare disease. Once described, she recognized the story and suspected it was pemphigus. It was. Imagine the number of people diagnosed that have never met a single person familiar with pemphigus, including many of their own medical practitioners. Because of our work, one less patient feels alone at the beginning of her journey.

It is the six degrees of separation that brings us together.

If you are interested in a relaxing weekend getaway, perhaps in the scenic Ashton-under-Lyne countryside, consider spending it with the PEM Friends (UK) June 27-28, 2009. Hosts Raymond and Carolyn open up their beautiful inn and stables to P/P patients and their families in Westerhill, Ashton-under-Lyne in the County of Greater Manchester. The Stables is available as early as June 22nd people would like to make a holiday of it!

On Friday, June 27, Carolyn will prepare an evening meal. She will also have plenty of food and drink for anyone to make a meal or snack for themselves at any other time.

On Saturday, there will be a Gala Dinner in the main house and guests are encouraged to dress up for this occasion.

The Stables is a business and a donation of 10/per night, plus a 10 donation for the Gala Dinner, while not required, is greatly appreciated. For more information, visit, call Carolyn at 0161 343 7100 or 07831 349978, or email