Welcome to "Miles for Miles"!!
This is the story of an amazing little boy, Miles, who came into this world in 2006 as the only son to some good friends. He is a wonderful, charming and smart little boy who gives hugs to everyone and can't stop kissing his little sister. His enthusiasm for life even reaches his feet which seem to always be a step ahead of his little body. He loves music and dancing and like most boys his age he is enthralled by dinosaurs and sharks. Although in most ways Miles is the normal adorable three year old, he is different in one very big way.
Miles has been diagnosed with Progeria, a fatal genetic disease characterized by accelerated aging. This deadly disease becomes apparent at around 18-24 months of age when children with Progeria, who are born looking healthy, begin to display many characteristics of accelerated aging. These children fail to grow, lose body fat and hair, their skin ages, they experience stiffness of joints, and hip dislocations. All children with Progeria die of heart disease and/or stroke at an average age of thirteen years (with a range of about 8 - 21 years). The intellect of children with Progeria is unaffected, and despite startling physical changes in their young bodies, these extraordinary children are intelligent and full of life. Please see www.progeriaresearch.org for additional information about this devastating disease.
The Progeria Research Foundation (PRF) is the only organization in the world dedicated to discovering the cure and effective treatment for children like Miles. The PRF was created to be the driving force worldwide and by centralizing all the information and resources on Progeria it can provide information and guidance and be a valuable resource for Progeria families. In the last ten years, the PRF has made leaps and bounds from its first work involved in discovering the gene that caused Progeria to now running drug trials to find a cure for the disease!
Through the Progeria Research Foundation Miles has the opportunity to participate in the first triple drug trial to ease and eventually eradicate this disease! Our team "Miles for Miles" is dedicated to raising money to fund Miles’ continued participation in the clinical trial to keep him as healthy as possible and provide relief for all the kids to come. As a team, we will run the Pittsburgh Marathon on May 2, 2010 to raise awareness and all proceeds will go directly to the PRF to fund the clinical trial for Miles and the other children with Progeria. Please consider donating any amount feasible to this great cause, because a small donation goes a long way! For example, $50 will pay for a month of Miles’ medication; $80 will pay for one day of the two weeks every year Miles has to visit the foundation for testing and treatment; $150 will pay for a week of cardiovascular and bone studies; and $210 will pay for a month of lab tests.
Your help will ensure that Miles is able to participate in these unique clinical trials with the hope of slowing and eventually stopping the progression of the disease in his little body.
Thank you so much!
Stephanie Bunt (Organizer)
"Miles for Miles" Runners:
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!