National Porphyria Awareness Week

March 29-April 5, 2008

National Porphyria Awareness Week provides YOU with the 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 have provided the following list.  We also have many materials to assist YOU:  Fact Sheets, Posters, Brochures, Overviews, etc.  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 talents to help achieve the educational programs of the APF.  Our talents are varied and plentiful and can be used to help one another.  For example, you might want to donate one of your paintings, sculpture, weaving, etc.
• VOLUNTEER your skills, like computer expertise, business acumen, or other skills 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 grant program for charitable gifts, thus doubling the effect of your donation.
• JOIN the IN TOUCH network and discover new friends.
• HOST an IN TOUCH meeting in your area.
• HONOR your loved ones with a donation to the APF for their birthday, anniversary, holiday or a memorial gift.

Other APF members helped make this week a great success by:

• Wendy ver Voort walked 141 miles to collect research funds for the APF.
• Jenni Eberhardt held a concert with pianist Steve Hall 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.
• 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 manned our exhibit booths at national medical conventions.
• Kasey Knauff filmed a CNN/CEP special.
• 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, whose case of CEP was widely read.
• Dave McRae spearheaded legislation in WA for handicapped parking for EPP.
• Jennifer Gattoni and Tonya Love started an APF internet forum.
• Mathew Spaur provided website guidance.
• Megan Ralling educated her own doctors.
• Dan O’Reilly garnered major media attention.
• Charlotte de ne Guerre wrote a porph novel.

For information on how to participate in National Porphyria Awareness Week, please contact ELIZABETH at the APF, Toll Free:  1.866.APF.3635 or Elizabethapf@aol.com.
 4900 Woodway, Suite 780
Houston, Texas 77056
Tel:  1-866-APF-3635
Fax:  713.840.9552