Amy Ruhf wrote -
**For offline donations, send a check payable to Progeria Research Foundation to:
Fighting for their Future
PO Box 641
Flourtown, PA 19031
Nathan and Bennett are two little boys who are part of my Church family. Both of them suffer from Progeria, a fatal disease that affects approximately 250 children world-wide. Progeria is a premature aging disorder that results in many of the typical symptoms of aging and ultimately results in a shortened lifespan. Although they are usually born looking healthy, most children with Progeria begin to display many characteristics of Progeria within the first year of life. Nathan and Bennett are extremely small for their age and suffer from a significant lack of subcutaneous fat, wormian bones in their skull, clubbed fingers, acroosteolysis (reabsorption of the finger tips), stiff joints, muscle weakness, hair loss, developmental delays and delayed teeth eruption. As children get older, they suffer from osteoporosis, generalized atherosclerosis, cardiovascular (heart) disease and stroke. For children with classic Progeria, the average lifespan is 13 years. Because Mandibuloacral Dysplasia Type B is so rare, the life expectancy of Nathan and Bennett is unknown.
The Progeria Research Foundation was founded in 1999 in response to a complete lack of progress being made to help children with Progeria. When their son Sam was diagnosed in 1998, Drs. Leslie Gordon and Scott Berns were told that there was nothing that could be done and they should take their son home and enjoy whatever time they had with him. That simply was not acceptable to them, so they founded the Progeria Research Foundation with a mission to discover the cause, treatments and cure for Progeria. Today, PRF is the only organization in the world solely dedicated to this mission. Tragically, Sam lost his battle with Progeria on January 10th. The legacy of hope and inspiration that he left behnid have touched the hearts of many people across the globe.
As I thought and prayed, I felt a calling to not only raise funds for the Progeria Research Foundation but also to DO something that would increase awareness about Progeria and honor those children and families who are affected by it. It was out of this desire to serve and be used that the idea of HIKE4HOPE was born. In an effort to raise funds and awareness, and to honor the families and children who are affected by Progeria, I have committed to backpack one mile on the Appalachian Trail for every child who has Progeria (250+ miles total). These children may not be able to walk or hike one mile but I can, and I can carry them with me in my thoughts and prayers as I go. I’ve set a fundraising goal of $25,000 and have high hopes that I’ll be able to meet and exceed that goal.
A Cure is out there, it just hasn’t been found yet. Join me, and together we can be part of the village that can help to bring these children hope and a future.
Please contact me at firstname.lastname@example.org if you would like to learn more about my hike, PRF or Nathan and Bennett, Follow me on Twitter at @Hike4Hope1, and please visit my blog page at http://hike4hope1.blogspot.com