Posted at February 10, 2017 | By: | Categories: Advocacy Day

NFXF Advocacy Day Homework

Training, February 28, 2017
Registration Check-in 12 PM
Training Begins 1:30 PM

There are two things we would like for you to do before you come to the training in Washington, DC.

  1. Prepare a handout to give to your Members of Congress (MOC) or their staffer (whom you will most likely meet). Here are examples of what we mean by handout – and it should include your name and a way to contact you, e.g. email:
    • A collage of pictures of your family.
    • A single picture of your family.
    • If you have a sibling or self-advocate coming – it might be business cards or a mini-flip chart presentation.
    • To the right are a few actual examples of what others have brought in the past. You can download additional examples below.
  2. Come prepared to tell a 2-3 minute story about your family. What do you talk about? Here are ideas (and you might want to come with a couple of stories – see below):
    • What it was like to get the diagnosis – from how challenging it was to get the doctor to test to finding information and services for the diagnosis.
    • What it was like to go to a Fragile X clinic.
    • The challenges of your child’s behavior.
    • The challenges of finding adult services.
    • Your hopes for treatments.
    • Why you come all the way to Washington, DC.

    You want a story that makes an impact – one that they won’t forget!

On Tuesday during the training you will practice telling your story with the group that you will be making the visits with on Wednesday. You will determine who is going to say what/when. The reason we suggest you come with a second story is that you want to show the life-impact of the condition. That is, we suggest that you don’t have everyone in your group talking about when they received the diagnosis.

But know that we will help you tell your story and help you put it in the context of your group.

It is an amazing experience – one that you won’t forget.

 

Questions? Jeffrey Cohen — j.cohen@fragilex.org