National Porphyria Awareness Week Events

The Kick Off Event of the Shadow Ride was a huge success! Thank you all for coming and having fun with us. More details and photos to follow.




We continue to share the stories and events of our members who are enthusiastically promoting Porphyria Awareness in their communities. (On the picture on the left: 11 weeks old, Abby May LeGrand from Tacoma, WA). 




  • Amy Chapman - Selling APF wristbands and t-shirts, find out more at:
  • Cynthia Maria Franco - On April 21 will be giving a 6-8 min speech with a 1-2 min question and answer session to her college communications class regarding the topic: "What is Porphyria?" 
  • The Cook Family - continued with the Hat Day in Vernon, TX and distributed wristbands in their local communities. Read more:
  • Tara Cantley - Passed out educational brochures, materials, DVDs and other info at local hospital/clinics to educate physicians.
  • Chanda McCaskill Fogelsong - Planned a softball awareness game for next year (2016). She will give a little speech and throw the first pitch of the game.
  • Lisa Iborg Lafeber - Posted son's story on Facebook. Join our Facebook groups to learn more and stay in touch with fellow-patients!

We would like to thank all APF members for their efforts, for educating physicians and others in their communities and for raising porphyria awareness! 


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