Thursday, March 13, 2014
Running over obstacles to raise Awareness for Porphyria
Merideth McGinley is a new APF member but is already a very active one. Merideth says that the main goal of her fundraising event is to raise as much awareness for porphyria as possible. Merideth says, "My last visit to the hospital really opened up my eyes to how little medical professionals really know about the disease. If my fundraiser can help just one person has an easier experience with getting diagnosed then I will feel like I truly accomplished something." She goes on to say, "When I was 19 years old, I was diagnosed with Acute Intermittent Porphyria. Since being diagnosed in 2008, I have been in and out of the hospital and it has made me realize many people along with medical professionals do not know what Acute Intermittent Porphyria is or how to treat it. Read more…
I have decided to run in the Warrior Dash on August 3rd in order to raise money and awareness about this disease. Read more about the Warrior Dash at http://warriordash.com. All donations made on my APF FirstGiving web page will go to the American Porphyria Foundation which is dedicated to raising awareness along with improving the health and well-being of individuals and families affected by Porphyria. All donations are greatly appreciated and can be made right through the APF FirstGiving site or by sending a check or credit card donation to the APF by calling Toll Free 866.APF.3635”
FirstGiving is a web platform that the APF has provided for Fundraisers and Awareness campaigns to make it easy for you and your contributors to use for promoting your campaign and accepting donations that go directly to the APF.
There is no cost to you to set up a Fundraising page under the APF account.
Visit http://www.firstgiving.com/fundraiser/meridethmcginley/warriordash to donate to Merideths Warrior Dash fundraiser and to become familiar with the First Giving platform.
To set up a free Awareness/Fundraiser page go to http://www.firstgiving.com/americanporphyriafoundation
“Remember…..Research is the key to your cure!”
#PAW2018 This is one of the hereditary hepatic porphyrias. Its inheritance is autosomal dominant. The deficient enzyme is porphobilinog...
Happy Thanksgiving everyone 2017
What is Rare Disease Day? TAKE A LOOK AT THE EVENTS HAPPENING AROUND THE WORLD FOR RARE DISEASE DAY! Find out how yo...
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved ...