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National Porphyria Awareness Week

 

April 17-April 24, 2010

National Porphyria Awareness Week is an opportunity to enhance public and physician awareness of the porphyrias in your community.  Since many of you have asked for suggestions to accomplish this important mission, we offer the following list.  We also have many materials to assist you:  Fact Sheets, Posters, and Brochures.  Please contact us at the APF office if you need any help getting started.

  • TELL your story to local media.  Television, Newspapers and Community Magazines often seek human interest stories about people who suffer with a major illness and cope with the challenge.  Telling your story can help others in a similar situation.
  • SHARE knowledge about porphyria at your doctor’s office and local hospitals.  You might suggest that they host a seminar or grand rounds on porphyria.  Some members have even set up an information table or exhibit at a health fair.
  • ASSIST at an upcoming medical convention to help educate physicians on porphyria and/or assist at your hospital.
  • VOLUNTEER your skills, like computer expertise or business acumen, to help achieve the educational programs of the APF.
  • HOLD a community race, car wash or other fund raising activity.
  • DONATE to the APF.  You will be supporting life-saving research and educational   programs for patients and physicians.  Find out if your employer has a matching program for charitable gifts, thus doubling the effect of your donation.
  • JOIN the IN TOUCH network and discover new friends.
  • HONOR your loved ones with a donation to the APF for a birthday, anniversary, holiday or memorial gift.

Other APF members have helped make Awareness week a great success in years past:

  • Wendy ver Voort walked 141 miles to collect research funds for the APF.
  • Jenni Eberhardt held a concert to benefit the APF.
  • Karen Eubanks was one of the participants in the production of our terrific DVD.
  • Arunas Brizgys “starred” in the Discovery Health program on television.
  • Lisa Kanscar held fund raising and awareness events at her local hospital.
  • Mira Geffner spoke at Ovation Pharmaceutical to help their employees appreciate the significance of their work.
  • Parker Snyder created a display table at his wrestling championship in Montana.
  • Peggy Goudeau donated her handmade quilts for the APF raffle.
  • Lauren Warren ran an Ironman Race to help fund the APF.
  • Nita Busby started a support group in CA.
  • Bob Barnes volunteered his computer skills.
  • Justin Jones wrote music about porphyria.
  • Grace Warfield, Claire Sadowniczak, Charles Johnson and his family, Margret Johnson, Jack Finnegan, Beth Kepple, Danielle and Stephanie Frazzini, Debbie Pucharis, and Mathew Bohn, Margaret Johnson, and many others staffed our exhibit booths at national medical conventions.
  • Kasey Knauff filmed a CEP special on CNN.
  • Elizabeth Petersen helped write and edit the newsletter and our first website.
  • Elizabeth and William Brougher painted the APF Christmas Cards.
  • Monica Firchow wrote a website on her father, Gene, who had CEP.
  • Dave McRae spearheaded legislation in WA for handicapped parking for EPP.
  • Mathew Spaur provided website guidance.
  • Megan Ralling educated her own doctors.
  • Dan O’Reilly garnered major media attention.
  • Charlotte de ne Guerre wrote a novel about porphyria.

For information on how to participate in National Porphyria Awareness Week, please contact us at the APF, Toll Free:  1.866.APF.3635 or porphyrus@aol.com