May is Neurofibromatosis Awareness Month
Posted May 12, 2011

May has been designated as Neurofibromatosis (NF) Awareness Month. While there is not yet a cure for NF, scientists and researchers are making tremendous strides in their efforts to understand, and treat this disease.

The Neurofibromatosis Research Program (NFRP) has been a cornerstone of the Congressionally Directed Medical Research Programs (CDMRP) for 15 years. The second-oldest of the CDMRP's research programs, the NFRP is the world's largest funder of NF research - more than $214 million in appropriations has supported 268 projects since 1996.

Many significant contributions from the NFRP have advanced the field of NF research, most notably:

  • Generation of mouse models of NF-1 and NF-2 - key resources for understanding and developing treatments - have been shared with more than 50 research laboratories
  • Creation and funding of a nationwide NF Clinical Trials Consortium, providing for the rapid execution of clinical trials
  • Fostering the development of collaborations to bring together investigators for the exploration of novel avenues of research
  • Bringing in new investigators into the field of NF research

Key to the success of the NFRP is the participation of consumer advocates. Whether they serve on Peer Review panels, help guide the program through participation on the Integration Panel, press for more answers on finding a cure or treatments for NF, or simply share their experiences, their passionate support is a valuable asset for scientists and clinicians.

Neurofibromatosis is a lifelong condition that is rarely fatal but can affect vision, hearing, balance, and loss of limbs, and could lead to learning disabilities. It manifests in one of three forms: NF-1, NF-2 or Schwannomatosis. NF is a condition that knows no ethnic, geographical, or racial lines, and can occur in any family. NF can be inherited from a parent who also carries the NF gene, but in some cases, a patient's diagnosis is due to spontaneous genetic mutation. More than 100,000 people in the United States are affected with NF which is more prevalent than Cystic Fibrosis, Duchenne muscular dystrophy, and Huntington's disease combined.

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