Advocacy From Home: How to Establish Fragile X Awareness Day

We often hear from parents who say they really wish they could do more for Fragile X awareness but cannot due to lack of time, money or childcare. So we are here to say there are multiple ways to get involved and spread awareness right from your own home.

One terrific way is to establish a Fragile X Awareness Day in your state. It may sound intimidating but the process is not really a difficult one.

The best way to start is to contact your state Community Support Network (CSN) group. Together, with their knowledge and support of your efforts, contact your local legislator by phone. Every legislator has a staff, so you’ll be connected to the staff member who is responsible for keeping the legislator up to date on specific topics. Having the backing of a nationally recognized family support group and organization helps bring validity to your request.

You should identify yourself, give your address and say a little bit about your family. Let the person know how Fragile X and the public’s lack of awareness of it has created extra challenges for you.

Congratulations to Holly Usrey-Roos for recently getting Fragile X Awareness Day declared in her state!

You may find that the person you are talking to has no knowledge of Fragile X. Be prepared with a brief description (you might try writing it down beforehand if that makes it easier for you) and direct him or her to the NFXF website for more details.

Then it’s time to make your “ask.” You can tell the staffer that you would like your legislator to introduce a bill recognizing July 22 as Fragile X Awareness Day. Explain that having it on that date isn’t required, but it would be nice to line up with Fragile X Awareness Day as recognized by the U.S. Congress and already observed in multiple other states.

Let the staff person know about other states that have successfully made this happen, and offer to send him or her a copy of the wording of one of those proclamations. Having the example on hand will save a lot of time and effort for all parties.

The staff member will discuss your request with the legislator and, if you ultimately get approval, the staff will draft the bill for the legislator to introduce.

The main task remaining is to keep them moving the bill forward. Calling back periodically (perhaps every two weeks) asking for an update will help keep it from being forgotten.

Whenever you follow up the key is to be calm, pleasant and helpful. Offer your assistance if they need it, thank them and then let them know, nicely, that you will be calling again.

A hearing for the bill will be scheduled after it is introduced. During one of your follow-up calls, ask the staff member to let you know which committee will be holding the hearing and when it is scheduled.

It will probably not be necessary for you to attend the hearing, though it never hurts to show up and put a face to the bill if you can!

Whether you go or not, you, your friends and family should send letters of support to the members of the hearing committee. It’s probably going to require a number of phone calls, and it will definitely require patience, but establishing a Fragile X Awareness Day in your state is a great way for you to contribute to the Fragile X community.

Authors

Melissa Welin
is co-founder of the . She and her husband live in Cambridge, MA with their son who has the full mutation. Melissa blogs about their lives with Fragile X at www.basicallyfx.com.

Holly Usrey-Roos
is the Community Support Network Program Coordinator for the NFXF and founder of the .

For guidance through the process of establishing Fragile X Awareness Day, the following CSN leaders are available to help: Tammy and Andy Selinger (xfamily@aol.com), Holly Usrey-Roos (holly@fragilex.org), Patricia Kisamore (pookins@bellsouth.net) and Denise Devine (frxrcofwmass@aol.com).