My Friend Max

In Orlando, Florida a young boy by the name of Max Paul has a normal life of a 9 year old. Playing, school, swimming (lots of swimming) keeping his Mom and Dad (Lori and Jim) busy. The only thing is, Max has Cystic Fibrosis.

Max’s day consist of taking special enzymes to aid in his digestion and then there is the “shaky vest” twice a day. The vest is hooked up to an air pump that beats on his chest to loosen the phlegm that forms on his lungs, and he wears a head gear that sends mist into his lungs to help the process. Then there is school; it is s short trip since Lori home schools Max to help protect him from possible respiratory infections.

Why do 8 tandem bike riders and a support crew of 14 want to go coast to coast in all kinds of conditions and terrain? It must be for the cool medal they receive when they get to Annapolis, MD or the publicity or the recognition? No we just would like to help 30,000+ kids have a chance of breathing normally and living somewhat of a normal life.

 

About the Cystic Fibrosis Foundation

Cystic fibrosis is a life-threatening genetic disease that affects the respiratory and digestive systems of 70,000 children and young adults worldwide.  More than 10 million Americans are symptomless carriers of the CF gene.  About 1,000 cases of CF are diagnosed each year.

The CF Foundation is a donor-supported 501(c)(3) non-profit organization dedicated to finding a cure, controlling cystic fibrosis and improving the quality of life for those with the disease.  Nearly 90% of every dollar of revenue raised is available for investment in vital CF programs to support research, care, education and finding a cure.

Cystic Fibrosis is considered an “orphan disease” because there are less than 100,000 people affected worldwide. The cost of research and development are extremely high. A new drug called Kalydeco™ has had some promising results but it only works in 4-5% of those affected with CF at a cost of $25,000 per month. Continued research will increase the effectiveness and lower the cost of these drugs.

When the CF Foundation began, few children lived to attend elementary school.  However, with advancements in research and care of individuals with the disease, the median age of survival for a person with CF has increased to the early 40s and beyond.  Although the outlook for a child born with CF today has improved tremendously, we are still working towards a cure and are asking for your continued support in this effort.

Find out more at cff.org.