Fragile X Advocacy

2014 marked the 11th National Fragile X Foundation Advocacy Day (NFXFAD) in Washington, DC. Over the past 11 years, our annual advocacy efforts have resulted in nearly $300 million in funding for Fragile X research and clinical support.

From March 4-5, nearly 170 advocates participated in more than 160 meetings on Capitol Hill. Your donations played a vital role in funding the NFXFAD program and ultimately made our time in DC a success.

Self-Advocacy Speaking for Herself

Mallory Weinstein, 18, from Virginia Beach, VA, attended this year’s Advocacy Day. She was one of nearly 20 self-advocates, a record number, and an exceptional example of the empowerment all our advocates feel at this event. Your donations make it possible for all of us, including many self-advocates, to participate every year. Thank you, again, for your support of Advocacy Day and the Foundation.

Over the two days, Mallory was easy to spot by the bright smile on her face. She and her mother, Tracey Shaffer Weinstein, participated in the Tuesday afternoon training session that prepared them to meet with their Members of Congress the following day on Capitol Hill.

This was Mallory’s first Advocacy Day and Tracey’s second.  Coincidently, Tracey attended the first NFXFAD in 2004, and she was amazed by how much the event had grown and become so well-organized.

It’s donors like you who have enabled Advocacy Day to grow into such a powerful event. Not only has  Advocacy Day raised hundreds of millions of dollars through government appropriations for Fragile X, it has also given people like Mallory and Tracey the opportunity to make a difference by speaking out about the need for Fragile X funding and opportunities for research.

Traveling with a group of four other families from Virginia to meet with their state’s elected officials, Tracey shared details of living with Fragile X. While Tracey painted a broad picture through her story, Mallory was able to add important points about her own experiences and lent a face to Fragile X in the meetings.

Mallory bravely explained the adversities she’d overcome, particularly in school. “Kids can be so mean at school, especially in my freshman and sophomore years, but I’ve learned to not let it bother me.” Participating in NFXFAD was a powerful and meaningful experience for Mallory and the other self-advocates and advocates. Not only is NFXFAD a way for parents and caregivers to feel empowered, it’s also an inspiration to watch and listen to self-advocates speak on their own behalf.

When asked how she felt about her meetings on Capitol Hill, Mallory said, “I was a bit nervous, but I did it. I think our group did a great job.”

She was right. She did an excellent job advocating for Fragile X. She and the nearly 170 others in attendance achieved the collective goal of making their voices heard among their elected representatives.

Fragile X Self-Advocate

Tracey also explained that Mallory recently applied, and was accepted to, George Mason University’s “Mason LIFE” College Special Needs Program. “Mallory decided to accept the offer and plans to attend George Mason, which also happens to be the program Congressman Harper mentioned in his speech on the House floor the morning of Advocacy Day. His office accepts students from the program for internships so I pulled him aside and asked if Mallory had a chance of participating in the internship program. He told me to keep in touch! Perhaps more possibilities are heading Mallory’s way!” Tracey’s comment is a true example of how Advocacy Day can open many doors for individuals living with Fragile X. Not only was she able to take on Fragile X on a national level through her visit, she was also able to build personal connections that could make lasting changes to Mallory’s life. At the Foundation, we’ve heard countless stories about the lasting relationships that events like Advocacy Day have built, and you can be assured that your support helps people in the Fragile X community on a personal level, as well as on a national level.

With your help, we were able to create a unified message and stand together on Capitol Hill. Over the years, your donations to our advocacy efforts have resulted in hundreds of millions of dollars in federal funding for Fragile X research and clinical support. Thank you for giving us the ability to spread the word about the need for Fragile X funding and research. We applaud Mallory and the other self-advocates and advocates who came out this year, shared their stories and communicated our asks to Congress.