Mission: The pediatric brain tumor foundation is a 501(c)(3) nonprofit charitable organization that seeks to find the cause of and cure for childhood brain tumors by supporting medical research, increase public awareness about the severity and prevalence of childhood brain tumors, aid in the early detection and treatment of childhood brain tumors, support a national database on all primary brain tumors, and provide educational and emotional support for children and families affected by this life-threatening disease.
Programs: In 2014, the pediatric brain tumor foundation:- paid $1. 8 in research and related grants - served 6,190 family support program clients- awarded 100 college scholarships - held one radio-thon that reached more than 130,000 listeners - participated in patient advocacy efforts at the federal level with the alliance for childhood cancer - held 37 ride for kids program events around the country, attended by over 9,000 ride participants and volunteers. - had 328,746 page views to our websites, www. Curethekids. Org and www. Rideforkids. Org - mailed 66,677 national newsletters and annual reports - sent 858,377 informational emails about our activities, programs and events. - provided funding to the central brain tumor registry of the united states, the brain tumor epidemiology consortium, and the scientific journal neuro-oncology- provided direct financial aid to families through our georgia chapter office - 175 families with $204k through 21 hospitals in 9 states. During the second year of our 2013-16 strategic plan, we made critical investments of financial and human capital to achieve six key objectives, including growing existing fundraising programs and creating new revenue sources to fund more research. We also intentionally invested in creating a network of local chapters to reach and serve more families affected by childhood brain tumors. To diversify revenue, we launched a new signature fundraising event, the starry night 8. 5k walk/run; established new corporate partnerships; created an annual and major giving program to increase non-event revenue; and introduced low-cost, efficient online fundraising pages for community members and endurance athletes. The ride for kids program worked with motorcycle industry experts to increase new and return participation; cross-promoted with the starry night program and added components to increase non-motorcycle participation. Our research investment strategy included establishing a framework for prioritizing funding; creating a research advisory network to provide highly informed perspectives on the biomedical research enterprise; and broadening the scope of our research funding and expertise. We began to expand our family support program offerings, including hosting our first educational conference for survivors and parents. On the organizational side, we recruited new board members from the legal, financial services, insurance marketing and hospitality industries; increased board involvement in fundraising and established chapter offices in georgia and illinois. In 2014 we created an integrated marketing and communications plan; established stronger brand identity by developing branded websites, fundraising events and educational literature; and expanded communications resources to support new programs and initiatives such as chapters and online fundraising. We increased our use of social media to communicate mission-driven stories and we developed new and updated educational resources for families.
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.