A good friend, Dave Tillapaugh, and his wife Michelle, recently learned that their son, Connor James, has been diagnosed with Adrenoleukodystrophy (ALD). ALD is a rapidly progressive disease that affects the central nervous system, often resulting in complete paralysis and death in as few as two years.
While there is no known cure, this disease is rare and not well understood. Over the course of the holiday season, Connor will be hospitalized and will receive a Bone Marrow Transplant (BMT) from one of his four sisters. Bone Marrow Transplants have had positive results with some patients and Dave and Michelle are doing everything in their power to help Connor fight the disease. Needless to say, treatments will be expensive.
Dave is not in the First program, although I am working on him and he has been kind enough to listen to me rave on about what a great program it is. He is, to me, a special person with a passion for people, and is an active and supportive member of the community. He volunteers as the Commissioner of the Rush Henrietta Soccer Club and is actively involved in his church and supportive of those of us who have been fortunate enough to know him. He is an outstanding role model for many of us, and is the person we turn to when we need to talk through the tough issues. We are fighting for Dave and his family, so they can fight for Connor.
At the request of friends and family, Dave has suggested two ways in which we can help. One is with prayer; the other is to consider joining the National Marrow Donor Program. You might be able to save another child’s life.
For the students in this forum, I would also ask that you consider careers in science that pursue cures for diseases like Adrenoleukodystrophy. There are few more noble or worthwhile endeavors.
While the Tillapaughs have not asked for money, the cost of treatment and hospitalization will be tremendous. To help them out, several of his friends have started a grass roots fund-raising effort and established a trust in Connor’s name. We are looking to raise $50,000 by 02/29/2006. This is a rare opportunity to make a direct and personal difference, as every dollar donated will go directly to the Tillapaugh family and will be used to help Connor James fight this disease. To find out more about Connor and how you can make a difference, please go to
http://www.careforconnor.org/.
The season ended. Not cool. - Koko Ed [more] 
21-11-2005, 10:01
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