I want to thank each and every one of you for your hard work and commitment to improve the lives of our loved ones with Fragile X Syndrome. I want to encourage you to keep in mind that there’s much more to what we need to do than going to Advocacy Day once a year. Of course, that’s so important, but to be truly effective, we all need to make this a year-round effort. So how can we do that? Here are a few suggestions:
First, it’s so important to stay in contact with the offices of your Senators and your Member of Congress. Doing so helps raise awareness of what Fragile X means and who it impacts. Remember that the Members are usually out of session every year in August so that’s a good time to try to set up a short meeting to go to the district office and get a picture with the Member. Perhaps there’s an event that you could invite the Member and his or her staff to attend. How about sending a brief handwritten note thanking them for their hard work, asking them to remember your loved one who has Fragile X Syndrome.
Also, the staffer in DC that handles healthcare issues is an important person to periodically reach out to, as well as the District Director. Both of these folks have direct access to the Member.
It’s okay to simply thank them without making a specific ask. Each time you reach out, you are helping raise awareness about Fragile X.
I sometimes attend fundraisers in Mississippi and take my son, Livingston, with me. All of them know Livingston and are happier to see him than they are me!
Those are just a few ideas on how we can all help each other. I am excited about what we can do by working together. After serving 10 years in Congress, I realize that no one can do everything, but we can all do something to help. God bless each of you.