What is the NF Network Advocacy Program
2019 NF Network Advocacy Program - Kim Bischoff, Executive Director of the Neurofibromatosis Network
Since 1996, Kim Bischoff has led the charge on Washington and been a vital voice for federal funding for NF research. In addition to her role as Executive Director, Kim sits on the CDMRP panel as a consumer and has done both peer review and programmatic review for the last 8 years. Kim, along with advocates from across the country, descend on Capitol Hill each February with the NF Network Advocacy Program and educate Congress on the importance of continued federal funding for NF research. Kim shares her story and experience of how she is spreading awareness and advocating for federal funds for NF research with her interview above.
NF Network Advocacy Program
The NF Network Advocacy Program is the leading national neurofibromatosis advocacy program working to secure federal funds for neurofibromatosis research. The program consists of several NF patient advocacy organizations coming together as one voice on Capitol Hill, educating Congress on the importance of funds for NF research. The program is advised by a Leadership Council and attended by NF patient organizations and individual participants.
For the past 20 years, During Hill Visit days, the NF Network Advocacy Program stormed the halls of Congress with strong NF advocates educating congressional offices about the importance of federal funding for NF research. Advocates participating in this program have been the voice of the NF community on Capitol Hill for over 20 years, and have been instrumental in generating over $600 million dedicated to NF research.
Since 1996, NF research has been funded through two vehicles:
Funded research led to the creation of the NF Clinical Trials Consortium a group of 25 clinical sites worldwide with an operational center to analyze data.
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 firstname.lastname@example.org.
Participating Organizations of the NF Network Advocacy Program
NF ADVOCATES PHOTO GALLERY
How is NF Research 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 Program (CDMRP), ran through the Department of Defense, was created in 1996 and is an efficiently run national program that offers cutting edge awards targeted directly towards Neurofibroatosis 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).
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.
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), and the Office of the Director (OD)
Become an NF Advocate
We need YOUR voice - join the NF Network advocates! 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.
To establish a meeting with your representative in your local district use the following links, for the House and Senate. After finding the representatives names, call the local office and ask to speak with the person who handles state scheduling and request a time to meet with the member of Congress when they are in the district. If they will not be in the office when you would like to meet, request to meet with a health or defense aide in that office. The ideal time for meeting is in the Month of February or March. For more information watch the webinar below on how to structure your local meeting. Please call us and we will be happy to assist you, 630-510-1115.
The NF Network Advocacy Program is the leading national Neurofibromatosis advocacy program working to secure federal funds for neurofibromatosis research. The program consists of several NF patient advocacy organizations coming together as one voice on Capitol Hill educating congress on the importance of funds for NF research. The program is advised by a Leadership Council and attended by NF patient organizations and individual participants.
During Hill Visit Days, the NF Network Advocacy Program storms the halls of Congress with strong NF advocates and educated congressional offices about the importance of federal funding for NF research. Advocates participating in this program have been the voice of the NF community on Capitol Hill for over 20 years, and have been instrumental in generating over $600 million dedicated to NF research.
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Watch: Talk to Your Member of Congress about NF Research