Porphyria Awareness Week - April 6-13, 2019

  • Friday, February 8, 2019

Over the next few weeks, the APF will be sharing resources and tools for you to create awareness in your community. Need ideas? Give the APF office a call on 866-APF-3635.

In 2018, countless members raised awareness through conversations, activities, fundraisers and more!! Leann Cook held a raffle at a local store for a donated Yeti cooler with signage about porphyria. Griffin’s sixth grade class all wore purple to honor and remember his mom. Louise Schlosser Braun hosted a table full of APF brochures at a local hospital to train Emergency Room staff and interns. Allison Stuhlsatz wrote for her local blog, the Wichita Moms Blog. Justin and Holly Hamilton were featured in their local newspaper, the Wauneta Breeze, about living with CEP. Dr. Bruce Wang (Porphyria Expert, UCSF) and Mary Schloetter did 17 back-to-back satellite media interviews – all which were written or shared in newspapers and local media across the country. Jared Ulmer, EPP, videoed a visit to a middle school science class where he taught them about his genetic condition. Jenna Steel, age 17, created a video about living with EPP. Morgan McKillop, age 8, was featured in a short film about living with a photosensitive condition. Jennifer Beck’s sister held a fundraising event at her workplace. Dr. Amy Dickey, EPP, held a birthday/awareness fundraising event on Facebook. Sharon Dill (VP) created a short video about living with porphyria– it was distributed to family and friends to raise awareness about the everyday burden. We even had a student at Eastern Florida State College, Charissa Strandberg, complete a genetics project on porphyria presented to class (wearing purple!) along with brochures.

What does 2019 hold? Murphy McNutt (PCT) is organizing a fundraiser for the APF at her fitness studio. She is planning a "ride" with the support of the studio owner. She plans to have riders wear purple! Check out Murphy's story on the APF website Member Stories, visit https://porphyriafoundation.org/for-patients/member-stories/porphyria-cutanea-tarda/murphy-mcnutt/

Let us know what YOU are planning!