- Fragile X
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Member of the NFXF Board of Directors and chair of its public policy committee
If you have never attended a Fragile X Advocacy Day, please make 2013 your first! And if you have attended, you know how powerful it is, so come on back!
We parents, grandparents, siblings, therapists, researchers and caregivers to those impacted by Fragile X lead lives that are busier than most. And let’s face it, life is too busy for most everyone today. So then why would you spend money on a plane ticket, fly to Washington and go visit a bunch of politicians who seemingly can’t accomplish the most basic and civil tasks— like getting along with one another and making our government work without having it go broke?
There are many good reasons for everyone in the Fragile X community— that means you!— to come to DC on March 5-6, to help us send an important message to Congress. Our loved ones deserve more from those we elect and send to Washington. Many of you know that I am a lobbyist by training. I spend every day, all day, walking the halls of Congress. I can assure you that there is no better lobbyist than someone who personally and deeply cares about an issue.
This is your one opportunity each year to set your very busy daily life aside and come to Washington to help us make a difference for our Fragile X family.
Our agenda will be bold. We are at a unique moment for Fragile X. We stand on the shoulders of many who came before us, who pioneered our cause. No longer do we need to be pioneers-we now have a well-established name and presence in Washington. Our doctors and researchers are helping to lead the way, with a number of promising drugs in the pipeline. They have even recently unlocked an important connection between the protein that causes Fragile X syndrome and autism. Think about it: the research being done for Fragile X may well open new doors to help cure autism!
This year we will ask Congress to pass the ABLE Act, which allows families with special needs to adequately save for the future. We will ask them to increase government funding to help us speed the transition from research to practical strategies and solutions for our loved ones. We will again ask them to consider the TEAM Act, which will help establish programs and a path to independence for our children as they grow older.
Fights like these are not easily won. You likely won’t see your congressmember slap his or her forehead and say, “Of course, why didn’t we do this sooner?” However, if you don’t come, who will tell your congressmember what our community needs? How will Congress know this is important to many of their constituents? If we all show up and then come back, again and again, they will listen— and we will win. More important, this is not winning as when a basketball or football team wins. Those wins feel nice but fade away with the next game or season.
Our wins in this far more important battle will change the lives of people we love and people we have never met— and the change will last for a lifetime!