The challenge of living with porphyria starts with how little is known about it among friends, family and the medical community. That is why National Porphyria Awareness Week is so important. It provides each of YOU with the opportunity to enhance porphyria awareness among the public and medical professionals right where you live. Many of you helped last year, setting up at hospital Health Fairs, seminars and grand rounds, gaining newspaper and television interviews, exhibiting at conventions. Some members even created their own campaigns to advance porphyria awareness, but we need more of you to:
*Tell your story to local media. Television, newspapers, community magazines are looking for human interest stories about people who have encountered a major illness and have undertaken the challenge to help others in a similar situation. LeAnn Cook facilitated a family interview in the local newsletter about the boys EPP struggles. The Fleegel family appeared in a documentary on EPP that aired recently.
*SHARE knowledge about porphyria at your doctor’s offices 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. Amy Chapman sold Porphyria Awareness wristbands and set up seminars for doctors in her home town and even on vacation in Bermuda. Joanna Floyd attended Health Fairs and sent emails about porphyria to nearby hospitals. Nathan Carr provided educational material about porphyria to his hospital’s medical library.
*ASSIST at an upcoming medical convention to help educate physicians on porphyria and/or ask your hospital or doctor if there is a local meeting where you can hand out materials. Lana Spoto, Janie Williams, Molly Buffington, Craig Humphries, Jessica Melton and her Dad, manned the exhibit booths at the Association for the Study of Liver Disease and American Society of Hematology medical conventions. You can do the same at this year’s meetings.
*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. for our fall raffle. An anonymous donor sent the APF one of his paintings.
*VOLUNTEER your skills, like computer expertise, business acumen, or other skills to help achieve the educational programs of the APF. Computer expert, Rob Saupe, helped us with complex computer technical issues.
*HOLD a community race, car wash or other fund raising activity. Clarita Kimball and Lauren Warren raced in “Night Runs” to enhance porphyria awareness. Wyatt King entered a Box Car race for porphyria.
*HONOR your loved one with a gift to the APF for a birthday, anniversary, holiday or memorial gift, like Dr. Susan Engel did to honor Bill Kasper and Linda M Pisciotta to honor Dr. Rebecca Corley; Here is one of the most unique ways . Kate Ruby purchased 200 APF wrist bands to put in the favor baskets for each guest at her wedding to honor her aunt. More about the bride and groom and her aunt with porphyria story in the June newsletter .
*WRITE a letter to your friends and family asking them to make a donation like, Ralph Gray or vote for your pet in the Pet Beauty Contest, which will advance Physician Education and add some fun to our lives.
The APF can help you accomplish this goal by providing materials for your project:
A Porphyria Live DVD
A Powerpoint Presentation
Information for Grand Rounds
Ideas to set up Medical Seminars
Ideas to exhibit at a Health Fair
Information to gain press