Monday, March 25, 2013



We are excited about all of the activities our members are planning for the soon approaching Porphyria Awareness Week, April 14-20 2013.  APF member, Monica Fleegel, is hosting a very creative campaign to heighten porphyria awareness and raise funds for the APF to train future experts via the Protect the Future program.  The attendees will also be writing letters to the FDA in support of the approval of new treatments for EPP, like SCENESSE.  

Read Monica's account below:

"Last summer, Monica Fleegel First Giving pagedue to the tireless efforts of the APF, I was able to participate in Phase III clinical trials that gave me relief from the pain of EPP (Erythropoietic Protoporhyria).  For the first time in my life, I spent time in the sun with my family and friends!! The APF was able to convince the FDA of the importance of continuing the trials and now we need to inform the FDA that we need a treatment so all who suffer from EPP can spend time in the sun. Through a letter writing campaign and your donations, we can assist the APF with this major endeavor.  I am expecting up to 75 people at the fundraiser. If I can get even half to write letters wouldn't that be awesome? My friends and family loved being in the sun with me after 52 years of me being inside, so they want treatments like SCENESSE for EPP approved!"  

You can also donate through Monica's FirstGiving donation page:

Donating through this website page is simple, fast and totally secure. It is also the most efficient way to support Monica's fundraising efforts.  Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!"

We hope you will choose an awareness activity.  It may be as simple as bringing your Panhematin brochure to your doctors or taking the ER guidelines to your ER.  Some people have approached their local media to do a story on their cases of porphyria.  Watch next week for the Cook families event, HAT DAY, which will take place in all the schools in their town for PORPHYRIA AWARENESS WEEK.
"Remember..... Research is the key to your cure!"

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