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Hello Friends, I wanted to take a few minutes to write all of you to let you know about some of the things we have accomplished as a team this year, and mostly, to thank you, on behalf of all those who suffer with this devastating disorder, for all you have done to enable effective treatments and hopefully, someday, a cure for NF. I haven't done exhaustive research, but I'm nearly certain that this team. . .our team, has now attained the status of being the world's largest publicly funded NF research entity. That's a mouthful, and I think quite significant on many levels. It means, more than anything else, that we matter; that we've made a difference; that we have begun to create the change we've all dreamed of seeing in the world for all those with NF. I know that writing about financial matters typically is boring, and I don't want to lose your attention, so I'll keep this part short. At this writing, it looks like our team's revenue for 2007 will exceed 1.5 million dollars. Personally, I don't find that part boring at all. . .actually, I find it quite amazing and rewarding, considering our humble beginnings - so does our Board of Directors, our co-workers at the Children's Tumor Foundation, and especially, the researchers and clinicians who we fund with the money we raise. This past year we have seen our core marathon team effort grow by nearly 20%. And, we have also reaped the benefits of some outstanding efforts from our newly formed and growing NF Endurance Team. Those Endurance Team efforts have added approximately $700,000 to our totals through events like Race Across America, the Malibu Nautica Triathlon, and the amazing Tumornator Team efforts out of Atlanta. We've added our name to the charity team roster at many events, and our signature neon yellow and blue race singlets are becoming commonplace all over the country. We are at nearly every major marathon or half marathon event, and at many other events of all distances. The ball is definitely rolling. It is our job now to keep it going. . .to keep it growing. Perhaps the most compelling reason that our team is doing so well is that, at our core, we all feel an overwhelming passion to relieve the pain of others. As a team, we are willing to go through the effort and occasional pain to train and participate in a charity based endurance event to bring attention to this disorder; but more importantly, we bring attention to the significant suffering of those we know and love who live with NF. As a team, we are willing to go beyond our own fear of failure or embarrassment as we push ourselves physically, and as we ask our friends and family for support, because we know that by overcoming that fear we are indeed helping others in much worse shape than ourselves. We've lost several friends this year to this disorder, and many others have had to undergo life threatening operations and procedures, while others have endured countless chemo, radiation and therapy treatments of all kinds. We've prayed for these friends, we've run for them while we trained. . .and I know I speak for many when I say that we have cried with them in their pain. As a father, coach, and the director of this team, I am overwhelmed by our success and by how far we have come. . .however, I am equally overwhelmed by how far we have to go. This team funds investigative research awards, drug discovery initiatives, an NF preclinical consortium, and pilot clinical trials. We have developed and funded a national clinical network to provide consistent proven professional care for NF patients while gathering data for various manifestations of NF to benefit future clinical testing of discovered treatments or drugs. It's a great circle of exciting and wonderful progress. This team provides the fuel to keep the process and progress moving forward. It's an awesome responsibility. . .to provide fuel for this machine, and I’m sure you’ll agree, it's a responsibility we don't take lightly. I would like to challenge all of you not only to participate in one or more of our scheduled events in the coming year, but also to ask some of your friends or family members to join us as well. Join us in this mission we all hold so closely to our hearts. Let’s continue to light up the streets of this country in neon yellow – and let the world know we are out here making a difference!!! It has been an awesome year, and I don’t want to rain on the parade; but for every dollar we have raised for NF research, Congress has cut at least two more. Our foundation does its best to lobby Congress for this money, but we are at the mercy of people who don’t know or understand NF. That’s why I think the future of NF research truly lies right here with this team and this foundation. One of my favorite quotes is part of the Serenity Prayer: God grant me the serenity By being part of this team, you have all embodied the courage, and demonstrated the wisdom that enabling effective treatments and a cure is a change we can make in the world. The Children's Tumor Foundation is at the core of NF research progress worldwide. By joining and supporting this team you have chosen to put your collective shoulders behind an unparalleled effort to solve this NF puzzle that plagues so many of us. As I tuck Arianna into bed each night, I am grateful for each and every one of you. . . as is she. Speaking for Bob, Trish, Suzanne, Valerie, and the entire staff of the Children's Tumor Foundation, we thank you for your support; and in turn, we pledge our support to you and your families for the years to come as we go down this road together. May the joy of the Holiday Season fill your hearts and homes, and I truly hope to see you on the course at one of our events this year. . .for we will only solve this puzzle by working together - one mile, and one dollar, at a time. Sincerely, Steve Kendra |
