The Sy Syms Foundation has awarded a $75,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Early Diagnosis Awareness Program. This will be the sixth consecutive year the Sy Syms Foundation has supported the Program.
The IPPF had the pleasure of interviewing Lindsey Horan, AADR’s Assistant Director of Government Affairs about their 2018 Advocacy Day and important legislative issues.
It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor picturesque; it ended with a gauntlet of addicts outside the methadone clinic near my hotel. No sooner did I arrive in my hotel room when the phone rang. He was early, and I was spent. Everyone has a story.
The end of the year is a great time to look back at our programs and assess the progress we’ve made toward reducing diagnostic delays of pemphigus and pemphigoid. Our patient educators continued to reach more and more dental students at schools across the country.
Working for the IPPF has been something I have been interested in doing for about five years, since my pemphigus vulgaris finally got under control. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our community pulls together and rallies for each other; it’s amazing how we sincerely care about one another.
The biggest problem with dental implants in pemphigus and pemphigoid (P/P) patients is that P/P are often treated with corticosteroids or other immune suppressants for prolonged periods of time.
Conferences are an excellent way for us to meet dental professionals and spread awareness of P/P and the IPPF. In November, we attended the American Dental Association’s Annual Meeting in Washington, DC. December found us at the Greater New York Dental Meeting in New York City, and in January we kicked off the new year at the Yankee Dental Congress in Boston.
On the last day of February millions of people around the world will observe Rare Disease Day. Get involved by visiting the U.S. (www.rarediseaseday.us) or global (www.rarediseaseday.org) Rare Disease Day website before February 29 to learn about events in your area and what you can do.