Hydrocephalus Advocacy – Make Your Voice Heard

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by Karima Roumila, MPH

capitol building in washington dcThe Hydrocephalus Association would like to make hydrocephalus more known in Congress.

Let’s educate our policy makers about hydrocephalus and let them know that constituents in their districts are affected by the condition and more research funding is needed.

Contact Your Legislator for Hydrocephalus

As a constituent, your lawmakers and political appointees know that you are the key to their understanding of important issues, not to mention their political futures—they want and need to hear from you on issues you consider important. Writing a personal letter allows you to state your opinion clearly and without interruption. It lets a lawmaker know how much you care about an issue and that you will monitor or watch his/her choices and actions.

Ask for:

  • Their support for increased funding for medical research at the National Institutes of Health.
  • Increased neurological research, specifically, for hydrocephalus.

Learn more about the cause:

Visit our Website. Also, read our Case for Research paper.

There are several ways to reach out to legislators. You may I) meet them in person; II) make a phone call; III) write a letter or email. Here are some tips on how to prepare for each different way.

I) Tips when you meet with your legislator:

A personal visit is another highly effective way of helping legislators to understand your position or program. Legislators welcome visits from constituents. They want you involved, even though they are busy people.

Flexibility is always important when making appointments with legislators. Be as flexible as possible when scheduling your meeting. Be prepared for schedule changes; do not take these changes personally, this is just how it is. Please remember that time is a valuable commodity to legislators. So with all contacts, be brief, be specific and be polite!

Scheduling the Meeting:

  • Be flexible and don’t be surprised if you only meet with a legislative aid.
  • Make your appointment in advance.
  • Be prepared for delays or cancellations.

At the Meeting:

  • Be on time for your appointment. Be prepared, dress neatly, be polite and be brief.
  • At the beginning of the meeting, state who you are, whom you represent, what you want to discuss, and what you want your legislator to do.
  • Do not be surprised if your legislator does not know about your issue or program. Avoid overwhelming the legislator with too much information and detail.
  • If you do not know the answer to a specific question, offer to find the answer and/or provide Hydrocephalus Association as a place to get answers.

Before you leave the Meeting:

  • Leave a one-page fact sheet summarizing your points; include your name, address and telephone number. More detailed information should be included in attachments. Again, be careful about overwhelming the legislator with information.
  • Perhaps the most critical part of your visit: ask your legislator for some sort of commitment, some way they can help you.
  • No matter what the next step is, you must be sure to follow-up! Ask your legislator (or aid) when you can call to follow-up (e.g. see if they have questions about materials you want them to read, make arrangements for a site visit, see if the other members of their caucus had any questions about the issue, etc.)

After the Meeting

  • Follow up the meeting with a thank you note, thanking the legislator for his or her time. Be sure to re-state your position in this note.

II) Tips when writing and email or letter to your representative:

  • Keep your letter short and to the point.
  • Support your position with data and facts.
  • If you are contacting them about a particular bill/law, tell them which one.
  • Tell your story.
  • Keep your letter to one page, one issue and state the purpose of your letter in the opening paragraph.
  • Be courteous.
  • Always close your letter by asking for a written response.

To contact your Congressperson, please visit this site.

To contact your Senator, please visit this site.

sample letter to congressman

click to download sample letter

III) Tips when making a call:

Before making a call, make a talking outline (notes) with your main points. Know the issue. Be prepared so you can confidently tell your story and ask for the change you want. A legislative staffer will answer the phone and will most likely ask if you are a constituent from the state or district. If you are not a constituent, be prepared to explain why you are calling and how the issue impacts you. Below is a sample call: Staffer: Congressman Smith’s office, how may I help you?

YOU: Hi, my name is NAME from CITY in the Congressman’s district. I’m calling about the need for increased federal funding for hydrocephalus research.

Staffer: Thank you for calling. YOU: Please tell the Congressman/Senator to increase federal funding for Hydrocephalus Research and better reporting of hydrocephalus

Staffer: I’ll convey your message.

YOU: Please tell the Congressman/Senator that I live with hydrocephalus and this issue is important to me and other constituents. Thank him for his support of hydrocephalus issues.

Staffer: I will. Thank you for calling.

We’d like to acknowledge the following resources in making this article possible

  1. http://nfed.org/index.php/support/advocacy1
  2. http://www.arthritis.org/media/advocacy/ambassador-kit/SampleCongressionalRequestLetter.pdf
  3. http://www.cfpa.net/Advocacy/LegVisit.htm
  4. http://www.bonner.org/resources/modules/modules_pdf/BonCurAdv101.pdf

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