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Porphyria Post

Porphyria Awareness Week - April 6-13, 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/member-stories/murphy-mcnutt

Let us know what YOU are planning!
Acute Porphyria members...Your help is needed!

Attention All Acute Patients!!
Have you had trouble getting PANHEMATIN in a hospital for ANY REASON - please contact the APF on 866-APF-3635 or email porphyrus@porphyriafoundation.org.

We need to hear your story. The APF is gathering your patient stories to prove that this is an issue across the US and to advocate for access to treatment on a federal level.
Acute Porphyria Survey

A research company has initiated an online survey to get a deeper understanding of patients’ experiences living with acute porphyria. The study can be taken on a laptop or desktop computer and will take approximately 30 minutes to complete. Participants will be screened to ensure they meet the criteria listed below.
Participants will receive a $50 stipend!
Criteria:
1. Are 18 years of age or older
2. Have been diagnosed with Acute Hepatic Porphyria (specific types include Acute Intermittent Porphyria, Variegate Porphyria, Hereditary Coproporphyria).
3. Own and are comfortable using a laptop or a desktop computer
4. Have internet access

Please call the APF at 866-APF-3635 to participate in the survey.
Volunteers Needed!

The APF will be exhibiting at the 2019 ACMG Annual Meeting in Seattle, WA April 3-5 AND Digestive Disease Week in San Diego, CA May 19-21. Are you interested in volunteering at our booth? If so, please contact Edrin Williams, Director of Patient Services, for additional information at edrinw@porphyriafoundation.org or 301.347.7166.

This is an incredible opportunity to raise awareness about porphyria to those with little knowledge about this rare disease.
RSVP Today

Patient Education and Support Meeting- Phoenix

LOCATION
Holiday Inn & Suites Phoenix Airport
DATE AND TIME
02/23/19 1:00pm - 02/23/19 3:00pm
3220 S. 48th Street | Phoenix, AZ | Room: Scottsdale | Family and friends are welcome to attend!

Patient Education and Support Meeting- Ann Arbor

LOCATION
Holiday Inn
DATE AND TIME
03/16/19 1:00pm - 03/16/19 3:00pm
3600 Plymouth Road | Ann Arbor, MI | Room: Wolverine A | Family and friends are welcome to attend!

Patient Education and Support Meeting- Seattle

LOCATION
Seattle Public Library- Central
DATE AND TIME
04/04/19 5:30pm - 04/04/19 7:30pm
1000 Fourth Avenue| Seattle, WA | Room: Washington Mutual | Level: 4 | Family and friends are welcome to attend!

Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com


American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org


STAY CONNECTED


"Remember....Research is the Key to Your Cure!"

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