Porphyria Awareness Week, and the WINNER IS...., and more!

Porphyria Awareness Week will be held on April 21-28, 2018. We strive to dedicate this week to promote this rare disease, reduce the stigma associated with porphyria through physician education, and provide support for those affected.

National Porphyria Awareness Week is the time for you to bring porphyria awareness to your local communities. We, at the American Porphyria Foundation, encourage YOU to help raise awareness and provide accurate information about porphyria where you live. The APF will help you accomplish your own activity by providing:

  • Porphyria Brochures
  • Porphyria Fact Sheets
  • PorphyriaLive DVDs
  • Information to gain media attention
  • PowerPoint presentations,
  • Press releases for local newspapers and television and MUCH MORE!

Contact Edrin at the APF office today to request information to be sent to you!

1.866.APF.3635 or email: edrinw@porphyriafoundation.org

 

 

CONGRATULATIONS TO

THE STUHLSATZ FAMILY

Ben, Allison, Clint, Hattie and Blair

The Shadow Jumpers team received amazing applications for this Disney experience. The process of selecting one family was extremely difficult as every child who lives with EPP is important to us. We are thrilled to announce the recipient of Light the Moment 2018. Ben, Allison, Clint (6), Hattie (4), and Blair Stuhlsatz (6 months) are headed to Disney World this summer!! Though they experienced the classic symptoms since the age of 2, both Clint and Hattie were diagnosed with EPP last year. The Shadow Jumpers team is going to work hard to offer them a safe experience of a lifetime at the happiest place on earth. Shadow Jumpers was created to help give kids with Erythropoietic Protoporphyria (EPP) and their families an opportunity to learn about this rare disease, read tips and tricks learned over time from other and to hear from fellow kids. Through spreading awareness, fellow EPP testimonials, tips to protecting yourself outside and some insight for parents, we hope all families with EPP will soon look at the sun as a challenge they can overcome…even at Disney! To learn more and submit your tips and tricks, visit:

Shadow Jumpers

 

 

Lights! Camera! Action!

Savannah Fulkerson, along with her big sister Lily, will be attending the star-studded premier of Midnight Sun this Thursday, March 15th in Hollywood, CA! The APF secured access for two with the generosity of Open Road Films, the film’s production and distribution company.

 

 

 

 

 

 

 

Based on the Japanese film, Midnight Sun centers on Katie, a 17-year-old sheltered since childhood and confined to her house during the day by a rare disease that makes even the smallest amount of sunlight deadly. Fate intervenes when she meets Charlie and they embark on a summer romance. The movie, directed by Scott Speer, stars Bella Thorne, Patrick Schwarzenegger, Quinn Shephard and Rob Riggle

The movie centers on the rare disease Xeroderma Pigmentosum (XP) that is characterized by severe photosensitivity as is Erythropoietic Protoporhyria (EPP).

APF member and Los Angeles local, Savannah says “I am so excited to go and see the movie and to see how they portray our lives!” Maybe we’ll get a movie review from our very own film critic! MIDNIGHT SUN will be released in theaters on March 23.

 

 

 

March 1 APF Newsletter now available!

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