You have the power to make a real difference for the entire NF community, right from your hometown. When you share your personal experience with neurofibromatosis, you put a human face to a complex condition, and that’s something no expert can do. Your story is the most powerful tool we have to secure federal funding for research and improve access to care.
Visit Congressional Home Offices in August
Each August, members of Congress return to their local district offices. This is the perfect opportunity to meet with them or their staff for a brief 10-15 minute meeting, either in person or online. You don’t need to be a policy expert. You just need to be you. Below are the steps to get started.
Start by identifying your U.S. Representative and two U.S. Senators. You can find their contact information and local office locations by visiting house.gov and senate.gov. You’ll often meet with a staff member, which is just as impactful. Staffers play a crucial role in advising legislators on what matters to the people back home.
Send a simple email to the district office. Look for a template that you can adapt in our Advocacy at Home Advocacy Guide by using the form below.
This is the most important part! Choose two or three things you want them to remember about your family’s journey with NF. It doesn’t need to be long or formal. Remember to bring notes—no one expects you to have it all memorized! Here’s an example of what you could say:
“Hi, my name is Maria, and I live right here in Springfield, IL. My daughter has neurofibromatosis. She’s eight, and we’ve already seen four specialists in three cities just to get her the care she needs. What I wish more people understood is how hard it is to find a doctor who knows this condition. Research funding is a big part of that. More research means more answers, more treatments, and more doctors who know what they’re looking at. I’d be grateful for anything you can do to support funding for rare disease research. Thank you for listening.”
If they ask a question you can’t answer, it’s perfectly fine to say, “That’s a great question. I’ll connect with NF Midwest and follow up with you.” Just let us know, and we’ll help you find the answer.
After your meeting, take a moment for two final steps. First, send a brief thank-you email within a day or two.
Thank you for meeting with me on [date]. I appreciated the chance to share my family’s experience with NF and why research funding and good care matter so much to families like mine.
[Your Name]
Second, please tell us how it went! Email Jennifer at Advocacy@nfmidwest.org with who you met, the date, and what you shared. Your feedback helps us prepare for our advocacy trips to Washington D.C. and shows the incredible advocacy happening across our six states.
Download the Advocacy Guide
Ready to get started? Fill out the form below, and we’ll send you a copy of our ‘Advocacy Starts at Home’ guide. It has all these steps, templates, and tips in one convenient document.
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