Dear Colleagues and Friends,
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Dear Colleagues and Friends,
Discovery Life Channel features a show "Diagnose Me" with an episode on acute porphyria with Dr. Lisa Kehrberg.
This program aired on, 5/8/2015, at 9 PM Central Time.
Article in the Tulsa World by MICHAEL OVERALL
Today we are sharing a powerful article published recently in the Tulsa World. Read the full story and join the conversation:
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.
Shadow Ride Kick Off Update
Our member Robert Hutson created a fundraiser that sells t-shirts. The Cook family, in addition to the traditional Hat Day, will distribute APF rubber bracelets for $1 each at local schools in the city of Vernon TX.
National Porphyria Awareness Week is coming up soon, what will you do this year to educate your community about porphyria?
National Porphyria Awareness Week (NPAW) 2015 is just around the corner, April 11-18!
We are continuing to fly participants to the research sites for the Natural History Study of Acute Liver (Hepatic) Porphyrias.
Finnian, nicknamed Finn, can show us a thing or two about promoting porphyria awareness. He wears his American Porphyria Foundation bandana proudly. The APF gave bandanas to all the pets, who entered the APF Pet Beauty Contest a few years ago. Finn is a 7 year old yellow lab. His mom is APF member, Kelsey Castro who says of Finn:
He is my best buddy! He is always by my side, especially when I'm not feeling well... I think he can sense it. I got him when I was 14 and in high school, and I'm now in college. Finn has been my best friend through lots of hard times. His favorite thing to do is go on hikes at a local nature reserve by my house and curling up by our wood stove in the winter.
28 February 2015 - Rare Disease Day. It takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Our APF members set a great example of different activities that increase awareness in their local communities. Let's continue the tradition! In preparation for NPAW, April 11-18, 2015, the APF will send you a packet with brochures, a complimentary DVD and extra materials if you would like to distribute information in your area.
This week more than 40 porphyria experts, PTF trainees and clinical research coordinators will be meeting at University of Texas Medical Branch in Galveston, TX to advance the porphyria education and research training.
Training agenda items include, but not limited to:
In preparation for National Porphyria Awareness Week, April 11-18, 2015, the APF will send you a packet with brochures, a complimentary DVD and extra materials if you would like to distribute information in your communities.
Everyone loves a cowboy love story, and you will love this true story about APF member, cowboy Scott MacMeeken and his beautiful bride Michelle. After they married, Scott saw firsthand how difficult it was for Michelle to live with the severely photosensitive porphyria, Erythropoietic Protoporphyria (EPP). Like many EPP patients, Michelle suffered from the searing pain and swelling upon venturing into the sunlight. EPP patients are often seen jumping from shadow to shadow to avoid the painful light.
Tara Cantley is one of the most recent patient volunteers to enroll in the Longitudinal Study, Panhematin Study and the Natural History Study of Acute Liver (Hepatic) Porphyria.
The APF just came back from the 56th ASH Annual Meeting, which was held in San Francisco, CA. More than 20,000 hematologists and health professionals in the field were in attendance. The APF educated physicians, professionals and everyone interested.