Monthly Archives: March 2009

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 http://www.pemphigus.org.uk, call Carolyn at 0161 343 7100 or 07831 349978, or email carolynblain77@hotmail.com.

The American Academy of Dermatology has announced that the International Pemphigus and Pemphigoid Foundation is a 2009 recipient of its prestigious Gold Triangle Award given for its patient website, www.pemphigus.org. Will Zrnchik, Director of Communications, accepted the award on behalf of the IPPF at the AAD’s annual meeting in San Francisco in March of 2009.

The IPPF informational website was recognized for the second year in a row by the AAD for its ability to raise awareness in the public and professional communities

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as well as the site’s overall design and content. In 2008 the IPPF won its first Gold Triangle and four MarCom Awards for its websites and newsletters.

American Academy of Dermatology Gold Triangle Award Winners are judged by a committee of Academy members and chosen based on specific criteria which include:

  • Raising awareness of dermatologic issues
  • Creativity/originality
  • Medical accuracy/quality of information
  • Enhancing awareness
  • Helping change public perceptions

If you would like more information visit www.pemphigus.org/news.