NF2 Advocacy 101

How is NF Federally Funded?

Since 1996, NF research has been funded by Congress through the Congressionally Directed Medical Research Programs (CDMRP-NFRP) via the Department of Defense (DoD), and through the National Institutes of Health (NIH).

Government 101

United States Congress: The United States Congress is the bicameral legislature of the federal government of the United States of America, consisting of the Senate and the House of Representatives. The Congress meets in the United States Capitol in Washington, D.C.

Both Senators and Representatives are chosen through direct election. Each of the 435 members of the House of Representatives (Congressmen) represents a district and serves a two-year term. House seats are apportioned among the states by population. In contrast, the 100 Senators serve staggered six-year terms. Each state has two senators, regardless of population.

These are the links to finding your senator and/or representative:

Current U.S. Federal legislative Information – Bills, Laws, Congressional Record, reports, and links to further information (Library of Congress) can be found at:

Committees: Both the House of Representatives and the Senate have committees that draft laws and determine funding levels for various appropriations. The following are the committees which are most important for NF federal funding.

  1. Senate Committee on Appropriations:
    • Labor, Health and Human Services, Education Subcommittee
    • Defense Subcommittee
  2. House Appropriations Committee:
    • Labor, Health and Human Services, Education Subcommittee
    • Defense Subcommittee

Why do We Need to Advocate?

Advocacy is an area that many NF2 patients and families are unfamiliar with and as a result may or may not be interested in participating in. The United States Government funds research for NF1, NF2 and Schwannomatosis through the Congressional Directed Medical Research Programs (CDMRP-NFRP), and the National Institutes of Health (NIH).

These two agencies currently fund millions of dollars toward research. We need to advocate for not only the continuation of this funding, but for funding to increase, specifically in the area of NF2 research.

How to Advocate:

1. At Your Home District

Everyone in the United States has a local Congressman from their district and two Senators from their state. You can make an appointment and meet with one of their staffers anytime you would like to. It is more difficult to get a face-to-face meeting with the actual Senator or Congressman, but it can be done if you are flexible and persistent.

Both your local Congressman and State Senators will have offices within a close proximity to your home town or city. Meeting at your home district is definitely easier than traveling to Washington, DC and can be equally effective if you meet with a staffer that relays your message to the Congressman/Senator if a face-to-face cannot be arranged.

Tell your Personal Story

To leave a positive impression on a Congressman/Senator you should think about leaving something with them to help make a personal connection. Some people have photos, picture books made up, wrist bands related to fundraising they do. Think of something that the staffer you are most likely meeting with can take to the Congressman/Senator and really relay your story and why funding for NF is so important.

What to Ask For

If you are going to meet with a staffer the first thing they will ask you is “What can we do for you?” You want to have an answer, and a specific one would be best. The reason why timing is more important here is because of the ‘Dear Colleague Letter’. Asking for the Congressman/Senator’s signature on that letter is a great achievement.

If the Congressman/Senator you are meeting with is on one of the above mentioned committees, they are NOT allowed to sign a ‘Dear Colleague Letter’, since they are a member of the committee determining the appropriations. By meeting with an actual committee member, you may actually yield more power. You simply need to ask them to not only continue NF funding, but increase NF’s allocation. These members change each year and again AdvocureNF2 can post links to sites where this information is available. Keep in mind, members of both branches of government and committee members have all been contacted by an NF representative, the “squeaky wheel gets the oil!”

How to Lobby Your Legislator

Even as a single person, you can have an impact on how your legislator votes, and what bills he or she decides to sponsor:

2. By Going to Washington DC

Going to DC to lobby is a much more extensive effort. Appointments have to be made ahead of time and it can have more impact if it is timed correctly. The following year’s appropriations begin getting discussed in February of the current year (eg. in Feb. 2010 fiscal year 2011’s appropriations begin to be discussed) with negotiations usually lasting into August/September. Those discussions all begin with a ‘Dear Colleague Letter’ that must be circulated in February and needs enough signatures on it. A ‘Dear Colleague Letter’ is a letter written by one Congressman/Senator asking a committee to consider a certain level of funding.

The more signatures on a letter, the more influence it is likely to have. While meeting with Congressmen/Senators at anytime is valuable, it definitely has more impact when your cause is fresh in the minds of the people who are actually signing on.

3. Write a Letter

Writing letters can also be effective. It takes approximately 30 letters about the same subject to have an impact on a Congressman/Senator. This is best done with a concerted effort through NF organizations like NF Network Inc. and CTF who each have lobbyists assisting their organizations and supplying them with up-to-date information.

AdvocureNF2 will supply links to those organizations along with sample letters, which again may have more of an effect at certain times of the year. Letters are sent by e-mail not postal service because of security screening.

Here are the links for NF Network Inc and CTF’s advocacy information and sample letters:

NF Network Inc

CTF (Children’s Tumor Foundation)