American Porphyria Foundation
More information: www.porphyriafoundation.org
To donate: http://givingpages.upenn.edu/AmericanPorphyriaFoundationawithTodRides
Porphyria is not a single disease but a group of eight rare inherited genetic disorders that differ considerably from each other. A common feature in all Porphyrias is the accumulation in the body of porphyrins and porphyrin precursors. Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends on the type of Porphyria and the symptoms. Patients experience severe neurovisceral complications and/or extreme photosensitivity. All porphyrias have PAIN in common!
The mission of the American Porphyria Foundation is to improve the health and well-being of all individuals and families impacted by Porphyria. We have maintained a relentess focus on education, advocacy, support services and research for the prevention, treatment and cure of the Porphyrias. Our mottos since we were founded in 1983 has been RESEARCH IS THE KEY TO YOUR CURE! We MUST drive research if we are going to change the path of Porphyria. This requires patients, physicians....and FUNDING!
Tod Teeple was an enthusiastic advocate for the APF and supporter of his beloved, Lauren Warren. Tod and Lauren Warren are a love story like no other. An incredible couple, Tod was determined to support Lauren's diagnosis of acute porphyria. As biking enthusiasts (and Lauren an Ironwoman!), Tod created a fundraising and educational solo bike ride. While training, Tod went down on his bike in a terrible fall. This led to a hospital stay and a long tough road ahead. Tod ultimately succumbed to cancer, with his dedicated partner - Lauren - by his side. Tod firmly believed in the work of the APF, in his life partner Lauren, and most of all, in God. The Million Dollar Bike Ride is dedicated to Tod!