I am Kim Bischoff, Executive Director of Illinois NF Inc., which is a participant in a national coalition of NF advocacy groups.  I have been actively involved in creating awareness of NF and promoting scientific research in this area since 1985, and I have a 18-year old daughter with NF.  I am here on behalf of the 100,000 Americans who suffer from NF as well as approximately 150 million Americans who suffer from diseases linked to NF, including some of the most common forms of cancer, congenital heart disease, hypertension, and learning disabilities.  

Mr. Chairman, I am requesting increased support, in the amount of $25 million, to continue the Army’s highly successful NF Research Program (NFRP). The program’s great success can be seen in the commencement of clinical trials only ten years since the discovery of the NF1 gene.  Now, with NF in the expensive but critical era of clinical and translational research, scientists closely involved with the Army program have stated that the number of high-quality scientific applications justify a much larger program.

What is NF?

NF is a genetic disorder involving the uncontrolled growth of tumors along the nervous system which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer, and/or death.  NF can also cause other abnormalities such as unsightly benign tumors across the entire body and bone deformities.  In addition, approximately one-half of children with NF suffer from learning disabilities.  It is the most common neurological disorder caused by a single gene.  While not all NF patients suffer from the most severe symptoms, all NF patients and their families live with the uncertainty of not knowing whether they will be seriously affected one day because NF is a highly variable and progressive disease.

Approximately 100,000 Americans have NF. It appears in approximately one in every 3,500 births and strikes worldwide, without regard to gender, race or ethnicity.  It is estimated that 50% of new cases result from a spontaneous mutation in an individual’s genes and 50% are inherited.  There are two types of NF: NF1, which is more common, and NF2, which primarily involves acoustic neuromas, causing deafness and balance problems, as well as other types of tumors such as schwannomas and meningiomas. 

Most strikingly, research has shown that NF is closely linked to cancer, brain tumors, learning disabilities, and heart disease, potentially affecting over 150 million Americans in this generation alone. 

NF’s Connection to the Military

NF research is directly related to military purposes because it is closely implicated with tissue degeneration and regeneration, to nervous system degeneration, deafness and balance.  Indeed, this Subcommittee, in past Report language, has stated that The Army-supported research on NF includes important investigations into genetic mechanisms governing peripheral nerve regeneration after injury from such things as missile wounds and chemical toxins, and it is important to gaining a better understanding of wound healing.  This subcommittee also stated that NF may be relevant to understanding Gulf War Syndrome because of the involvement of the nervous system.  

The Army’s NF Research Program

Recognizing NF’s importance to both the military and to the general population, Congress has given the Army’s NF Research Program strong bipartisan support.  After the initial three-year grants were successfully completed, Congress appropriated continued funding for the Army NF Research Program on an annual basis.  From FY96 through FY02, this funding has amounted to $90.3 million, in addition to the original $8 million appropriation.  Between FY96-FY01, 223 proposals have been received and approximately 80 awards have been granted to researchers across the country, with another 20 expected this year.  This research has produced major advances in NF research, such as the development of advanced animal models and clinical trials.

In order to ensure maximum efficiency, the Army collaborates closely with other federal agencies that are involved in NF research, such as NIH and the VA.  Senior program staff from the National Cancer Institute (NCI), for example, sit on the Army’s NF Research Program’s Integration Panel which sets the long-term vision and funding strategies for the program. 

Because of the enormous advances that have been made as a result of the Army’s NF Research Program, research in NF has truly become one of the great success stories in the current revolution in molecular genetics, leading one major researcher to conclude that more is known about NF genetically than any other disease.  Accordingly, many medical researchers believe that NF should serve as a model to study all diseases.

Future Directions

The NF research community is now ready to embark on projects that translate the scientific discoveries from the lab to the clinic.  This translational research holds incredible promise for NF patients, as well as for patients who suffer from many of the diseases linked to NF.  This research is costly and will require an increased commitment on the federal level.  Specifically, increased investment in the following areas would continue to advance NF research and are included in the Army’s NF research goals: