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Why Become an Advocate
NF North Central believes: advocacy raises awareness; advocacy empowers patients & caregivers; advocacy is research. For a rare disease like Neurofibromatosis, advocacy is the key to unlocking new therapies & cures. Promising studies being conducted through the NFRP are absolutely vital to my family & those we serve… and we will never stop advocating for their continued funding until the day a cure for NF is found.
Become an NF Advocate
We need YOU in our program of NF advocates! As the national leader in the promotion of government-funded neurofibromatosis research, the NF Network Advocacy Program wants YOUR voice. Join us in bringing our message to Congress each year: the security of federal NF research funding is crucial and is speeding science toward treatments! As an advocate, you will generate action from our elected officials by making calls and writing emails & 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. 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 the representative in your local district, please use the following links: House and Senate. After finding your representatives’ name, 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 their home district. If they will not be in the office when you would like to meet, you may request to meet with a health or defense aide in that office. The ideal time for a meeting is in the month of February or March. For more information, please watch the webinar below on how to structure your local meeting. Should you have any questions, please call NF Network 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 about NF and the importance of continued research funding. The program is advised by a Leadership Council and attended by NF patient organizations and individual participants from across the country.
For the past 20 years, a diverse and impassioned group of volunteers for the NF Network Advocacy Program have flooded the halls of the U.S. House and Senate buildings to educate our congressional leaders about the importance of federal NF research funding. Advocates participating in this program are the proud, loud voice of the NF community on Capitol Hill and have been instrumental in generating over $340 million dedicated to NF research!
Watch the video below: Talk to your Congressmen about NF research
RESOURCES
- Webinars for those impacted by NF
- Understanding Neurofibromatosis (ebook)
- Understanding Neurofibromatosis Type 2 (ebook)
In Their Own Words