Tuesday, November 23, 2010

The APF welcomes YOU

The American Porphyria Foundation ( APF) welcomes you to our new blog, Purple Light . The APF website is an educational explosion of information. The Blog will be the place where we weave pertinent information within the context of a human interest stories, yours and mine.

My name is Desiree Lyon Howe. I have been with the APF since day one when the APF began as an idea of mine and my friend, Jim Young. In the early 1980's, Jim and I met through several porphyria experts, namely, Dr. Claus Pierach and Dr. Karl Anderson. Just meeting another person interested in porphyria made such an impact on both of us that we felt that starting a foundation for people to learn more about the disease from experts and have the means to communicate with one another would be an important service to others who suffered with porphyria or had it in the familyt.

We discussed the concept further and settled on a name , the APF. Then we set about creating a plan that incuded selecting a Scientific Advisory Board as a first step. Without the most esteemed porphyria doctors in the country as our guides, we would not have the kind of recognizable standard we needed to have patients and their physicians pay close attention.

It was not hard to locate the best experts in the country. There were only a handful but they were all brilliant and world renonwn physicians and researchers. Imagine !!!!! That same group is still with us today.

Next we set up an office, which was my kitchen table and created our membership list which was comprised of two people, James and me. We are a long way from that now with a staff of five in Houston, one in Chicago and several more throughout the country. Plus, our two members has expanded to four thousand members and sixteen hundred doctors who want to be part of the APF. Our educational programs and services for patients and physicians are award winning. Our Protect the Future program to train the next generation of experts has become a model for other foundations and institutions , as as has our our In Touch support system. Our research projects are increasing , our govenment funding has increased and our social networking has helped spread our message tremendously. All of these services are a result of us working together.

Next week, I will begin the APF blog by sharing a bit of history and a few very intersting stories of the 15,000 people I have communicated with via the APF. Until then...Keep in Good Health !!!

The APF is all of us.

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