Tuesday, April 30, 2013

Monica Fleegels Fundraising / FDA letter writing / Porphyria Awareness Campaign.


Monica Fleegels Fundraising / FDA letter writing / Porphyria Awareness Campaign.

"Last summer, due 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 Protoporphyria).  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 they need to approve Scenesse , 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."     Monica Fleegel
 
        
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Monica's daughter, Monica, Sister-in-law, Brothers
 
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Monica developed a very creative idea to raise Porphyria Awareness, as well as a means to fund the APF Physician Education program and acquire letters from family and friends to advise the FDA about the importance and need for treatment for EPP.    Monica prepared a fundraising event on the APF - FirstGiving fundraising website.  Plus, she hosted a fun event to gather her friends and family together to write letters to the FDA about how EPP has affected the Fleegel family.

Monica reported, "So far $2,270.00 has been raised, about 20 letters and 50 people showed up to the fundraiser. It was very successful! People were so generous."

We sincerely thank Monica and all of her generous family and friends who participated in this wonderful event.   The members of the Fleegel family with EPP have been very active with the APF, even participating in a documentary on the subject shown in Europe.

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Cookie made by Monica's Daughter.
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National Porphyria Awareness week is held once a year. It is up to us all to continue Porphyria Awareness every chance we get. The APF has some great materials that you can carry with you when you visit your Doctor, or the Emergency room or any other contact you have with the medical community.

If you would like some of the Porphyria educational supplies, please contact the APF office: 1.866.APF.3635 and request them today.

Remember.....Research is the key to your cure!
  

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