PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC
A fellow biker friend introduced me to the PBTFUS "Ride for Kids" in 2000, where I began by participating in the Baltimore-Washington Ride, one of now 40 around the country each year. I became very interested after attending the funeral of the 9 year old daughter of good friends of ours who died of a brain tumor. For 2001, I began to ask for donations for the Ride, and worked at this even harder each year as I learned more about the work of the Foundation.
In 2005, we moved to Charlotte, NC and I switched to taking part in the Asheville, NC ride each August. My wife and I vacationed in Asheville, and we took that opportunity to visit the headquarters of the PBTFUS while we were there and got to know Mike and Dianne Traynor personally.
I did learn that Dianne relentlessly reviews every research grant proposal in detail, and the PBTFUS requires that researchers share any knowledge gained with others. One result is the development of chemotherapy regimens that do NOT damage the growing brains of children as did adult drugs before the Foundation got involved.
There was some criticism of the fact that the Traynors brought their son Bryan into the "fold" as a paid employee. In hindsight, that was a superb decision. Mike died very suddenly and unexpectedly a few years ago and Bryan was able to jump right in and take over the work of his father.
At our visit to the PBTFUS, we could see for ourselves that there are VERY few (& very hard-working) paid employees of the Foundation. This works because the PBTFUS relies on a virtual army of volunteers and corporate sponsors that donate coffee, box lunches, etc. for each and every Ride.
This certainly motivated me, and I personally volunteer to deliver information/registration brochures for the Asheville Ride to all the motorcycle dealers in Charlotte and Gastonia, NC. As a professional photographer, I also take portraits of the Ride "Stars" (kids under treatment & in remission) with their families before the Ride, and of the "Celebration of Life" get-together at the end, and give all the images to the Foundation.
I've personally experienced the results of this organization in...
learning first-hand from the kids that the Foundation has helped what it has done for them. I have become good friends with one "Star" who attributes her life to the work of the PBTFUS. They helped her with college and she now has a job and a boyfriend, and volunteers in helping the organization.
Ways to make it better...
If I had to make changes to this organization, I would...
I really cannot think of anything right now.