Become an 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 

Structure of your meeting:

Preparing for your Congressional Meetings

  • Prepare a short document sharing your personal story
  • Collect letters and stories from other impacted by NF –Let Members of Congress know they have constituents impacted by NF in their state/district.

Important Points

  • Make it local -you are the constituent.
  • Make it Personal –tell your story.
  • Remember to ask for support, don’t assume they will help.
  • You’re likely to meet Staff and not the Members.
  • Be flexible about where you’re meeting is held -you may be asked to meet in the hall or in the cafeteria.
  • Meetings could last just 15 minutes. Plan to make your point quickly if necessary.

Meeting Details

  • Introduce yourself and share where you are from.
  • Give a brief background on NF –what is it and where does research funding come from Department of Defense (DOD) and National Institutes of Health (NIH).  See NF Fact Sheet.
  • Share your story.
  • Ask for their support (sign letter, put NF on their wish list).
  • Leave behind a packet of information explaining NF, our request and your contact information.
  • Thank them for their time and invite them to contact you with any questions.

Advocacy Do's and Don'ts:

When meeting with your Congressional Representative, follow these do’s and dont’s to help ensure a productive and successful meeting for your lobbying efforts.


  • DO arrive on time.
  • DO begin by thanking the Legislator and/or staff for meeting with you.
  • DO state that you are a constituent.
  • DO keep your message short, relevant and to the point.
  • DO designate a spokesperson.
  • DO make your ASK! Don’t just go over your points, ASK for your Member to take action on your behalf.
  • DO justify your request, but DON’T overwhelm staff with too much information.
  • DO leave suggested letters and fact sheets on the issue.
  • DO thank them.
  • DO follow up!


  • DON’T be afraid - You are a constituent and have a good story to tell!
  • DON’T be argumentative.  It’s okay to disagree.  Be polite, but persistent as you make your points.
  • DON’T claim to be an expert. If you do not know an answer to a question, offer to find out and contact them soon after your meeting.
  • DON’T assume that Members of Congress or their staff members understand the issue and avoid acronyms if possible.
#Tennessee – Sign up now for our #Memphis #TN Ask the Doc Meeting Don’t miss this rare #NF Doc/patient chat opp!