Advocacy Program

NF Network Advocacy Program Advocates,

from across the US

2024 NF Network Advocacy Program – Kim Bischoff, Executive Director of the Neurofibromatosis Network

Over the last 25+ years, NF research has exploded and expanded in ways we used to only imagine. From our first FDA-approved drug to exciting new developments and therapies in the pipeline, our work wouldn’t be possible without the hundreds of advocates and thousands of voices like you participating in the Neurofibromatosis Network Advocacy Program.

Since 1996, inspired by her daughter Jenni, Kim Bischoff – Executive Director of the NF Network – has led the charge in the fight for better treatments and a cure for neurofibromatosis. She has been a vital voice for federal funding for NF research, sitting on the Congressionally Directed Medical Research Program Panel as a consumer for both peer-reviewed and programmatic-reviewed NF research proposals for the last decade. Her presence and participation on that panel has been essential to efficiently spending our allocated research dollars to ensure we are expanding on and investing in promising studies and therapies.

Each year in February, Kim along with advocates from across the country, descend on Capitol Hill to educate Congress on the importance of continued federal funding of NF research. Kim shares her story and experience, along with the stories of thousands living with neurofibromatosis, with the hope of one day having a cure for all types of neurofibromatosis.

NF Network Advocacy Program

The Neurofibromatosis Network Advocacy Program is the leading national NF advocacy program working to secure federal funds for NF research. Advocates from across the country come together in Washington D.C. and unite as one voice for the NF community, educating Congress on the importance of these research dollars. Joined by several NF patient advocacy organizations, the program is advised by a Leadership Council to ensure our message is clear and strong in the fight to end NF. Over the last 25+ years, the NF Network Advocacy Program has been instrumental in generating over $400 million dedicated to NF research.

Since 1996, NF research has been funded through two vehicles:

  1.  Congressionally Directed Medical Research Programs (CDMRP)
    1. Cutting edge research to explore high-risk, high-reward studies
    2. Funding through the CDMRP has led to the creation of the NF Clinical Trials Consortium – a group of 25 clinical sites worldwide with an operational center to analyze data
  2. National Institutes of Health (NIH)
    1. Largest biomedical research agency in the world

NF advocates urge their senators and representatives to support NF research funding through the CDMRP and the NIH. Continued congressional funding is critical to the clinical trials that may ultimately lead to a treatment and cure for NF and related disorders. It is with your support and the help of our NF advocates that the funding programs become possible.   

You can play a vital role in securing federal funding for NF research. Our advocates represent the voice of the NF community in Washington D.C. and fight for a future without neurofibromatosis. If you are interested in joining the NF Network Advocacy Program Hill Visit Days or scheduling a meeting with your member of Congress, please give us a call at 630-510-1115, or email us at admin@nfnetwork.org. 

Participating Organizations of the NF Network Advocacy Program Leadership Council   

  • Neurofibromatosis Network
  • Neurofibromatosis Northeast
  • Texas Neurofibromatosis Foundation
  • Neurofibromatosis Midwest
  • Neurofibromatosis North Central

Participating Patient Advocacy Organizations

  • Neurofibromatosis Michigan
  • Neurofibromatosis Central Plains
  • Neurofibromatosis Arizona
  • Neurofibromatosis California
  • NF Tennessee (?)

How NF Research is Funded

Since 1996, NF research has been funded by Congress at the Department of Defense (DOD) through a Congressionally Directed Medical Research Programs (CDMRP) called Neurofibromatosis Research Program (NFRP) and through the National Institutes of Health (NIH).

The Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health (NIH) work together on neurofibromatosis research in several ways, including:

  • Coordination
    • The two agencies regularly communicate to avoid overlap in their funding
  • Strategic planning
    • CDMRP programs develop strategic plans that include research priorities, coordination with other organizations, and how to track research outcomes
  • Multidisciplinary teams
    • CDMRP research programs are managed by multidisciplinary teams that include experts from the NIH, as well as other organizations

CDMRP NF RESEARCH PROGRAM

The Congressionally Directed Medical Research Program (CDMRP), ran through the Department of Defense, was created in 1996. The Neurofibromatosis Research Program was the second program to be founded under this new arm and was essential in the process for developing our first ever FDA-approved drug. The CDMRP-NFRP is an efficiently run national program that offers cutting edge awards targeted directly towards neurofibromatosis research through a competitive peer-review process to fill gaps in ongoing research, complementing initiatives sponsored by other agencies, such as the National Institutes of Health (NIH).

NATIONAL INSTITUTES OF HEALTH

The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives. Studies and research done at NIH help develop foundational science that is then supported through additional funding with private grants or financial support through the CDMRP-NFRP.

There are several NIH Institutes that conduct NF research:

  • National Cancer Institute (NCI)
  • National Institutes of Neurological Disorders and Stroke (NINDS)
  • National Institute of Child Health and Human Development (NICHD)
  • National Eye Institute (NEI)
  • National Institute on Deafness and other Communication Disorders (NIDCD)
  • National Human Genome Research Institute (NHGRI)
  • National Center for Research Resources (NCRR)
  • National Heart, Lung, and Blood Institute (NHLBI)
  • National Institute of Mental Health (NIMH)
  • National Institute on Aging (NIA)
  • National Institute of General Medical Sciences (NIGM)
  • National Center for Advancing Translational Sciences (NCATS)
  • Office of the Director (OD)

Become an NF Advocate

It is with your stories and voices united that we can make an impact on the future of NF research. Please join the NF Network advocates and use your voice to speak out, speak with, and speak for the NF community around the world. As the national leaders in the promotion of government-funded NF research, we need YOUR voice to bring the NF message to Congress each year to secure federal funds for NF research. As an advocate, you will:

  • Generate action from our elected officials by making calls and writing letters
  • Stay on top of policy and legislative issues through alerts and updates
  • Help elevate the need for NF research funding
  • Join us to increase NF research dollars

Interested in having your voice heard on the Hill? Create your own personal story! See below for samples of letters we have received for reference on how to write your own personal story. The NF Network will identify your representatives by your address, so please be sure to include your address and contact information at the bottom of your letter. To submit your story, please email us here.