We believe in science. NF North Central (NFNC) is R.A.C.E.ing to advance the development of new NF drugs & therapies by funding innovative medical research studies. We are committed to doing more with less. By focusing on collaboration, we are able to connect medical researchers with clinicians and patients, thereby, bypassing bottlenecks in funding and speeding efficiencies in the field of NF research.
NFNC is advocating for federal research dollars to fund the U.S. Army’s NF Research Program (NFRP) through the Congressionally-Directed Medical Research Program (CDMRP). Over the past 20 years, the NF Network Advocacy Program has generated over $340 million dedicated to NF research by being the voice of the NF community on Capitol Hill. NFNC has seats on the NF Network’s Board of Directors as well as its Leadership Council, the Advocacy Program’s steering committee.
NFNC is invested in the UW NF1 Translational Research team at the University of Wisconsin-Madison. By using its novel swine model to research the individual manifestations of NF, this team has set out to identify & develop personalized and effective treatments for NF1. Recently the NF Swine Project received a funding grant from the CDMRP. Additional funding comes from NF North Central, NF Network, the NF Team and private donors. UW-Madison has pledged that none of the money raised and donated by NF North Central will go to administrative costs born by the university. This means any donation made by NFNC supporters will go directly to the University of Wisconsin-Madison Biotechnology Center.
NFNC is committed to the Response Evaluation in Neurofibromatosis & Schwannomatosis (REiNS) International Collaboration. REiNS is working to develop new standardized response criteria for determining treatment response in patients with NF1, NF2, and Schwannomatosis. NFNC is helping develop REiNS patient surveys, gather response criteria & report on these findings so that their data may be used in future clinical trials and improve researchers’ abilities to determine and compare treatment efficacy.
NFNC is collaborating with Mayo Clinic Department of Clinical Genomics by connecting patients with clinicians and researchers through outreach, symposiums, and other collaborative sectors. Mayo Clinic is part of The Neurofibromatosis Clinical Trials Consortium (NFCTC), which was established by the Department of Defense NFRP to develop and perform clinical trials for the treatment of NF complications in children and adults.
NFNC supports Onno Faber, founder & chairman of the RDMD initiative. RDMD recognizes that important research records are on the shelves in hospitals across the country. As a result, drug researchers can’t access the information they need to advance treatments. Onno—a rare disease patient himself—has developed a way to allow patients to unlock their own records and contribute them to research, privately and securely. As a result, the pharmaceutical industry can access these records at no cost—one of the major hurdles in drug development—and accelerate treatments for rare diseases of all kinds, including NF.
NFNC is grateful for Seventeen22, whose mission it is to provide financial assistance to families impacted by NF. Seventeen22 understands that NF affects every individual differently. Patients typically see various specialists and seek diverse medical treatments, making it costly, even with insurance. This organization works to defray healthcare costs for NF patients in order that they can receive appropriate medical care while alleviating the overwhelming financial burden so many are faced with.
It is NFNC’s objective to attract more talent to the field of NF research, develop its own medical review board and fund its own research. We have set out to attain this goal by contributing to NF research initiatives in a multi-disciplinary way. NFNC is engaging congressional leaders, medical researchers, & clinicians through its commitment to advocacy, participation in NF symposiums and collaboration with NF-specific research studies & patient advocacy groups. Amid the fast-paced advancement of science in the fields of clinical genomics & bioscience, we believe that effective NF treatments—and, soon, a cure—is on the horizon.
- Webinars for those impacted by NF
- Understanding Neurofibromatosis (ebook)
- Understanding Neurofibromatosis Type 2 (ebook)
In Their Own Words