LINKS Goes to Washington!

Holly Usrey-Roos
LINKS Program Coordinator

NFXF Advocacy Day is important to Fragile X families throughout the US. It is an opportunity for each of our individual voices to come together to make one powerful voice for everyone living with a Fragile X-related Disorder.

Twenty-nine LINKS leaders attended this year’s Advocacy Day in Washington, DC. In addition to the training and time on Capitol Hill, they also enjoyed a dinner together.

Advocacy is one of the key components of our LINKS program, and while our leaders work hard on it all year long, this one day each year has extra importance to them. And I realized the best way to share that with you is by sharing their words.

I go to Advocacy Day because I want the best for my children’s futures, and I know I can make a difference by showing them my face in DC and showing the commitment I have to their well-being. I also go because I hope that by raising awareness of FXS to my congressmembers and senators there will be more and more answers, funding, and help just because they can now put faces with a syndrome that affects so many families and individuals. You know, really making it personal.

—Rachael Gibson, Utah Fragile X Association

Every day I’m a parent, and I get the opportunity to help my child learn and grow. But Advocacy Day is an opportunity for me each year to take our story and make a difference for so many more. It gives me great pride to be among so many amazing people each year who are able to coordinate their busy lives so that we can all make a difference for Fragile X.

—Mike Makris,

Advocacy Day for me has become the most empowering experience of my life. I am a mother, sister, aunt, cousin, daughter, granddaughter and friend to someone affected by a Fragile X disorder. I attend Advocacy day for them. It is not about politics. It is about educating, promoting awareness, sharing your story, and working towards promoting independence. The training that is provided gives you the tools to be able to discuss the “asks.” It is addicting! This was my third year and I look forward to many years to come!

—Missy Zolecki,

I never thought anything would pull me into the crazy political arena in DC until Fragile X became a major part of our life with Liam’s diagnosis in 2010. Finding out that there was something I could do to help further research and push legislation to improve Liam’s future finally gave me back a little control and power just when I was feeling like our life was spinning out of control. Advocacy Day is the most energizing and empowering experience. When I finish my day on the Hill, I know I made a difference in my son’s future. My voice was heard and it mattered. And I don’t stop with that one day. I check in with all my contacts from the meetings periodically throughout the year. It really does make a difference and we can all do it!

—Ruth Butler,

Advocacy to me means responsibility and opportunity. I have always been a politically involved person because I learned years ago that for real change to take place it takes people pushing for that change. People seldom get what they do not ask for. I think there are a lot of people who hope and wish but fewer who actually leave their comfort zone and go out and speak up to make those hopes and wishes reality.

Advocacy Day is a great opportunity for us to get people speaking up in a safer environment because other people just like them are there for support. I get an opportunity to travel around the United States and other countries and see the needs of the disability world. I have always thought I have a responsibility to share those needs with the people who can make some difference. Four years ago that message became personal when we got Tyler’s FXS diagnosis. My son cannot advocate for himself, and I have to be his voice. Advocacy Day allows me to not only show off Tyler and his many gifts but it lets me be Tyler’s voice in front of people who need to better understand who he is and the value he brings to society.

From a LINKS leader position I want to attend Advocacy Day for several reasons. One is to be an example to others and encourage them to attend. Real strength is in the numbers, and though we had record numbers this past year, we can do WAY better. Second, I get the information first-hand about the needs of the Fragile X community, and I can share that information with families in Iowa and South Dakota. Finally, I get to see all the amazing people who have become so important to Jammie and I over the past couple years. The sacrifices of time and money are so worth it when I get to interact with my Fragile X family. I cannot say I will never miss an Advocacy Day in the future, but I can promise I will do everything in my power to be there if I can!

—Tim Geels,

Our thanks to each and every LINKS leader who came to Washington, DC this year! We deeply appreciate your commitment!



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