To: U.S. Congress
Neuro-fibroma-tosis. Have you ever even heard of it? Probably not, even though it is the most common neurological disorder affecting 1 in 3000 people. Neurofibromatosis (NF) is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time.
NF affects all races, all ethnic groups and both sexes equally. And as of yet, there is no known cure for NF.Clinical drug trials are being conducted by ten major hospitals called the “NF Clinical Trials Consortium”. With these trials comes the hope of accelerating drug development.
Also, the Children’s Tumor Foundation NF Clinic Network has been formed. It was started as a pilot program of 4 clinics in 2006 and now is being rolled out nationwide to provide the best care through local clinics. Future plans include a centralized tissue repository to facilitate the study of NF biomarkers and to help identify new drug targets.
As these advances have been made, there is still a decline in federal funding. With the war in Iraq taking up so much federal funding, NF research is losing out.
The CDMRP’s NF Research Program has taken a huge hit from $25 million in 2005 to $10 million in 2007. The National Institutes of Health, who could help to continue some of this research, has also been under pressure of budget cuts. 2007 marks the fourth year in a row that the NIH’s budget hasn’t kept up with inflation, thus causing a 13% drop in real dollars.
Funding in the past has been able to help find out a great deal of information about the basic science of NF. It is unfortunate that these budget cuts are coming to light now when things have really started to accelerate.
We are here fighting for a cure, and in order to get a cure we must have the federal funding required to make these advances. We are asking that federal funding be pumped back up to AT LEAST $20 million a year. So many of us are affected by NF and dont even know it.
And for those of us who do know, for those who have to live with NF, each day can be harder than the last. Help us fight for this funding and in turn you will be helping to fight for the cure to NF, the cure that we all so desperately need!