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Children’s Tumor Foundation and American Academy of Pain Medicine Partner to Expand Field of Pain Studies in NF

The Children’s Tumor Foundation (CTF), the global research leader dedicated to all forms of the genetic condition NF, and the American Academy of Pain Medicine (AAPM), a leader in pain study, prevention and care, have partnered to expand the number of investigators dedicated to the study of pain affecting the 2.5 million patients worldwide living with NF. The partnership announcement was made at the AAPM’s Annual Meeting on March 23 in Fort Lauderdale, FL.

NF refers to all forms of neurofibromatosis and schwannomatosis, including neurofibromatosis type 1 (NF1), NF2-related schwannomatosis (NF2), and non-NF2 related schwannomatosis (SWN). NF causes tumors to grow on nerves throughout the body, and affects one in every 3,000 births of all populations equally. In addition to intense and disabling pain, NF may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, and cancer.

Driven by the critical need to attract more researchers into the study of NF pain, the Children’s Tumor Foundation is announcing a new RFA to the specialized audience of pain experts at the AAPM meeting. CTF will provide up to $200,000 over 2 years to investigators new to NF, while also matching the researchers with CTF’s experts for collaboration and mentorship. The AAPM is partnering with CTF to bring the RFA and other NF research information to its community of pain specialists.

Applicants are encouraged to look for approaches to the various aspects of pain in NF1, NF2, and/or SWN, from basic biology to innovative clinical management. These can include studies to investigate the source of pain, the identification of the characteristics of painful tumors, the identification of effective therapeutic interventions, or other effective alternative methodologies that will help improve the lives of the NF patient population. 

The RFA details can be found here:

Since its founding in 1978, CTF has invested over $200 million into its mission of driving research and medical priorities for NF, often in collaboration with other private and public funding partners. This has led to the first-ever approved drug for NF (Koselugo / selumetinib), available to a limited subset of NF1 patients, and there is an urgent need for more treatments for the various NF types and manifestations. NF research is at a promising and crucial turning point: the science is ready to be translated; the number of clinical trials have tripled compared to a decade ago; CTF has built innovative platform trials that will increase the efficiency and speed of clinical drug testing; a ‘one-stop-shop’ infrastructure has attracted many companies into the NF space; and there are now 10 pharma/biotech companies with active clinical NF programs (compared to zero a decade ago).

With its mission to drive research, expand knowledge, and advance care for the NF community, and a vision to ‘End NF’, CTF’s aim is to bring more stakeholders from across medical disciplines into the NF space who can provide knowledge, investments, drugs, and other treatment possibilities in order to accelerate the treatment options available to all NF patients.