August 19, 2010
When our family first learned that our daughter (who was 4 months old at the time) had NF, we were overwhelmed. The internet had precious little accurate information about NF that was not sensationalized and we were emotionally drained after seeing what might possibly be her bleak future. However, we thankfully soon found that the best source of accurate and update information, and hope, was the Children's Tumor Foundation. From that day almost 10 years ago, we have found that this organization is not only aware of the most cutting edge research and scientific advances in the field, but are funding much of it through their various programs.
The Great!
I've personally experienced the results of this organization in...
Through the Children's Tumor Foundation's NF Clinic Network, we have been able to access excellent clinical care for our daughter and are confident that the doctors and specialists are practicing the most up to date medical techniques and strategies.
More feedback
What I've enjoyed the most about my experience with this nonprofit is...
They are thankfully moving research closer to a cure by bringing the brightest minds in the scientific field together regularly through the annual NF Conference.
The kinds of staff and volunteers that I met were...
All excellent. A small staff that does the work of a very large organization.
If this organization had 10 million bucks, it could...
Fund all of the excellent research and science in the NF field (which benefits cancer research, heart disease, learning disabilities, and genetics) and increase public awareness of Neurofibromatosis (NF) in the general public.
When was your last experience with this nonprofit?
2010
MY ROLE:
Volunteer & I got involved in one of the Children's Tumor Foundation's national programs, the NF Endurance Team, and am now connected to many other NF families that have formed a very tight and supportive network.
Review from Guidestar