I had never heard of neurofibromatosis until my sweet grandson, baby Andrew, was diagnosed last year with NF1. Two family members who are experienced nurses had never heard of this either. So, it was shocking to learn that NF is the #1 most common genetic birth defect, more common than Duchenne muscular dystrophy, Huntington's disease, and cystic fibrosis combined!


NF causes tumors to form on nerves anywhere in the body, including the brain and spinal cord. It can lead to loss of vision and hearing, disfigurement, loss of limbs, skeletal defects, and forms of cancer. Half of all children with NF have learning disabilities and require special education. MTV recently showed a heart-breaking video of three brave teenagers who are dealing with NF tumors and deformities. PLEASE WATCH: http://www.mtv.com/videos/true-life-i-have-nf/1635785/playlist.jhtml

It is clear to me that the 1 in 3,000 babies born with NF need advocates and research for a cure, and that grandparents can help. In retirement, we are often blessed with more free time and energy than mom and dad, who may have other children, jobs, and daily caregiving duties.

I don't need to tell other grandparents out there how much I love my grandson, or how worried I am for his future. Chances are you will know someone with Neurofibromatosis. It could be anyone’s next child or grandchild. There is no effective treatment: no painless blood tests, or IVs, or surgeries, or MRI scans, which must include general anesthesia for small children. Our only hope is a cure, and this can only happen through research, but research requires money. As a retiree, I'm pretty careful how I spend my funds, so I set out to learn where my contributions would make the most impact. That's how I discovered the Children's Tumor Foundation and the NF "Racing4Research." ***Please click on the video below for more information on CTF.

Andrew and many others like him need your help. Please make a donation today. If you are unable to donate, you can help me spread the word about NF by watching the videos. Thank you for your generosity and for joining in the “Racing4Research” to cure neurofibromatosis! - Faye Eichholzer