Porphyria Awareness and Fundraising Events

 

Past and Present Events. 

*Events are listed below with the most recent Event first.*

 

 

~ May 10, 2017 -  Patient Education Meeting on the beautiful emerald coast in Santa Rosa Beach, Florida on Wednesday, May 10, 2017. You are invited to attend! 

 

~ April 28, 2017 -  The Cook Family Administrators, students and teachers from Vernon Middle School  decided to wear purple in support of National Porphyria Awareness Week and to show support for the Cook Brothers.

 

~ April 28, 2017 -  Jennifer Sutter educated members of the administrative team at her daughter's college about this rare disease. The school has put in place special accommodations to make sure that she arrives and departs her dorm/classes in a safe manner. 

 

~ April 27, 2017 -  Louise Schlosser educated doctors, nurses, and other healthcare professionals at the University of California, Irvine Medical Center about porphyria. Louise shared her story and left behind several resources provided by the APF to help educate many about this rare disease.

 

~ April 22-29, 2017 -  Dougie Spence shares his story in a 5 part Video series.

 

~ April 22, 2017 -  John Krause shares his story on social media to raise porphyria awareness! 

 

~ April 22, 2017 -  Jared Ulmer (Porphyria J) was contacted by a student named Ashly from Whitehall High School in Mechanicsville, PA to share his story with Ashly's honors genetics class! Way to go Ashly!

 

~ April 22-29, 2017 -  National Porphyria Awareness Week  The challenge of living with porphyria starts with how little is known about it among friends, family and the medical community. That is why National Porphyria Awareness Week is so important.

 

~ February 27, 2017 - March 2, 2017-  ​Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. Submit your stories TODAY to let Congress know about your experiences with this rare disease; how it has impacted your life and let them know which issues are most important to you.

 

~ March 1, 2017 - FDA Meeting for Acute Porphyrias

 

~ December 2, 2016 -  Patient Education Meeting in San Diego, CA

 

~ November 18, 2017 -  Denver Patient Meeting, hosted by Evelyn Jacobucci

 

~ November 5, 2016 -  The “Moo’ve It In The Moonlight” Run​  APF member, Shawn Willis, will be hosting the 2nd Annual "Moo've It In The Moonlight" Run in Burlington, NC on Saturday, November 5th at 6:00PM.  The event is held in the evening to highlight the challenges of those with light sensitivity.  There will be a 5K AND a 1 Mile Untimed Fun Run.

 

~ October 24, 2016 -  EPP Meeting at FDA The APF will be traveling to the Washington, D.C. area for an important EPP meeting with the FDA!  The FDA is hosting this meeting, so we MUST show them the extreme need for treatment.  The FDA will be observing how many people are interested, so we need as many people as possible to attend.

 

~ November 14, 2015 -  The Shadow Race: a Barrel Race in Vernon Texas. This year, in addition to a Hat Day, Cason & Caul are hosting The Shadow Race (benefit barrel race) in Vernon, TX in November.  They are getting some t-shirts together to sell as well. We appreciate all your support in raising awareness!

 

 ~ August 28, 2015 - Shawn Willis is a dynamo in everything he undertakes. He is the owner of the Chick-Fil-A stores in Burlington, NC.
On August 28, Shawn hosts the MOVE IT Moonlight Run from for porphyria awareness to help fund the APF educational programs. 

 

~ July 26, 2015 -  APF member, Victor Mejias, and his fishing club The Bent Rods Bass Club for the upcoming fundraising tournament. Bent Rods Bass Club strongly believes in giving back and in the Karma of helping others, so each year they pick a new Charity to support. For 2015 they have picked the APF.  For fundraising event they will be hosting the Bent "mini" Rods Challenge and raffling off a custom built bait casting rod & reel. 

 

April 11-18, 2015 - National Porphyria Awareness Week.  NPAW is the time we ask all people with porphyria to bring awareness to your own cities. NPAW has been very successful for the past ten years. Let's make this year the greatest! You can be involved in any way that works with your schedule, resources, and interests! Join the awareness movement in your local community! Together we can make a difference. Education and awareness are the first steps of treatment!  

 

April 11, 2015 - A Kick Off ride for the Shadow Ride on the famous Drummond and Hull ranches near Tulsa, Oklahoma in Pawhuska. There will be fun for everyone: live music, games, miniature donkeys to ride for the kids, the opportunity to meet other porphyria friends and Mary Hull's delicious Bar-B-QUE, plus, of course, The Shadow Ride TEAM.  

 

~ April 12, 2015 - Patient education meeting.  Note the day following the Shadow Ride on April 12, 2015, the APF will host a patient education meeting in Oklahoma City, OK with porphyria expert, Dr. Sylvia Bottomley. The meeting will take place from 2-5 pm at the fantastic National Cowboy and Western Heritage Museum.  

 

~ Porphyria Pie Challenge.  APF member Sarah Lee and some of our other APF members came up with a great way to help spread Awareness about Porphyria by taking a pie in the face on video and nominating others to do the same and posting it on Facebook, #porphyriapiechallenge. Adding the #porphyriapiechallenge hashtag to your post will help it circulate through fb better and gain the awareness level to make a difference. Read more...   

 

~ Lorri Stewart got in touch with Public Relations department of Caldwell Memorial Hospital, Lenoir NC. PR representative is going to let Lorri present information and hand out materials at their upcoming monthly meeting. She will also present brochures and talk about porphyria with Emergency Department personnel of the hospital. Besides, Lorri is donating paintings on behalf of all porphyria sufferers in an effort to raise awareness of the porphyrias.  

 

~ On Monday, 4/14/14, the APF member, Pierre Mouledoux, went before the Louisiana State House of Representatives Transportation, Highways and Public Works Committee to testify for the legislation regarding tinted windshields for Medical Exemptions. Read more...  

 

~ Cindy Craig is visiting hospitals and medical professionals in her area to distribute awareness materials. The ER team of her hospital ordered an Emergency Room kit with the guidelines for the porphyrias. Cindy is also inquiring if the National Porphiria Awareness week can be acknowledged at the state level in Missouri.  

 

 

~ Mark Abeloff will install an informational presentation desk in Berkshire Mall in Wyomissing, PA. He will show a film about porphyria and hand out brochures and fact sheets educating people in his community.  

 

~ Amanda Rich is making purple bracelets for survivors.  The bracelets are handmade and can be personally designed.  

 

 

~ Evelyn Jacobucci’s daughter makes purple arm bands for National Awareness Week.
She will present them at the science fair at her school to spread the knowledge about
porphyria.  

 

~ The Cook brothers, Cason and Caul, will continue a HAT DAY tradition for Porphyria Awareness Week 2014.  Read more....  

 

~ More than 50 packets with Awareness Week materials have been sent to the members during March and April. The patients will hand them out in their local hospitals and communities.

 

~ JoAnna Floyd Fundraiser and Awareness Event: Burpee Mania. Read more....  

 

~ Amanda Boston distributing Porphyria Materials to Nurses, Dr.s  and places a Poster at her local Hospital.  Read more.... 

 

~ New Orleans Marathon~Rock 'n' Roll Race Day For EPP Disease!  Read more....

 

~ Official APF Porphyria Awareness T-Shirts are Available Now!    Read more....

 

~ Running over obstacles to raise Awareness for Porphyria​.  Read more....

 

~ Amy Chapman's Porphyria Awareness and Fundraising Campaign.  Read more....

 

~ Cook Brothers and Family Promote Awareness Week​.  Read more....

 

~ Student Alessia Callahan Educates Classmates during National Porphyria Awareness Week.  Read more....

 

~ Monica's Porphyria Awareness Week Event.  Read more....

 

~ FDA Letters From People with EPP​.  Read more....

 

 

** A list of Porphyria related Television and other Media. View here...