humanity, friendship & progress—the greatest gifts
For the last 8 years or so, CureNFwithJack has been raising dollars and awareness toward the goal of finding an effective treatment or cure for NF. Of course, my motivation is self-serving. I want to save Jack’s life and make it better. However, it’s never been just about Jack. It has and will always be about benefitting the community. These past few years have been challenging but also very rewarding. We’ve had MRI’s, chemo, tumors, surgeries, sleepless nights, family strife, braces, IEP meetings and the list can go on. However, we have had yard sales, golf tournaments, fishing tournaments, Undie Runs, jewelry parties, birthday benefit parties, straight donations and other wonderfully creative ways of raising awareness and dollars. These events and the people who organize, participate, volunteer, share and donate are responsible for raising close to TWO MILLION DOLLARS through CureNFwithJack. Think about that. Many of you do this because of Jack or a relationship that ties you to him or to us and we are eternally grateful. Many of you may not be 100% sure where those dollars you entrust to me goes but you contribute because you trust we will do our best with those dollars. Your trust is well placed and Beth and I are always grateful for that trust. Among the things that we have supported through our partnership with the Children’s Tumor Foundation is the Synodos project. I read this today on a Facebook post from the President of CTF:
Our signature collaborative science model Synodos delivers again! Studying low grade glioma seemed impossible because there were not enough samples…. we were told the Children’s Tumor Foundation loves impossible problems…. we launched Synodos- an invitation to fix the impossible problem and now, 2 years later: 2 synodos groups (one led by Dr.’s Michael Fisher and David Gutmann) and one by Dr. Antonio Iavarone; gathered hundreds of samples from all over the world (NF has no borders!} discovered new mechanisms, new researchers joined the field…. THIS IS PROGRESS… I am beyond proud…. and the best part; there are more discoveries…. more options. Thanks Lauree and Jim Bob to kick off SYNODOS for LGG. Thanks Flashes of hope, CureNFwithJack and all those that made the Moffett match a reality 3 years ago. You helped making the progress we need to END NF!
But….
Now we need to fundraise Fast to translate these new findings in treatments for our beloved patients
We can do it! Together!
Can you believe that? We were specifically mentioned in this amazing update about the progress toward a cure. THIS IS YOU!!
