How to Advocate for Fragile X Families

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How to Advocate for Fragile X Families

NFXF Advocates spend time advocating with Congress for Fragile X priorities we can all get behind and have a tremendous success record:

  • Approximately $350/million per year in research. This wouldn’t get the attention it does without the hard work of our advocates.
  • $2 million/year in Fragile X programs at the CDC, a line item from Congress that is a direct result of NFXF advocacy.
  • Funding at the Department of Defense’s CDMRP office—something that can only come from Congress authorizing it. Thank you NFXF Advocates!
  • Enactment of the ABLE Act, allowing families to set aside tax-advantaged savings, including rolling over existing educational savings accounts without penalty, to pay for living expenses as an adult, without jeopardizing other sources of income or meaningful work.
  • Passage of the RAISE Act to support family-based caregivers.
  • Support for translational research, clinical trials, and newborn screening.
  • Awareness of Fragile X among members of Congress and their staff.
  • A solid reputation with Congressional staff and members as passionate advocates who want to work together to solve problems and improve the status quo.

The mid-term elections showed us, once again, control in Washington moves between parties, while our democracy survives. This underscores the work we do to bridge parties and build relationships. After all, Fragile X knows no parties. We also see that people come and go. Fragile X parent, and champion, Rep. Gregg Harper is retiring after 10 years in Congress, and 20% of the House next year will be new.

This means that, as we roll into 2019, your participation as an NFXF Advocate is all the more important to raise awareness, funding for research, and opportunities for individuals and families to improve their lives and future. You can be involved in a few ways:

  1. Join our NFXF Advocacy Facebook group to be alerted of opportunities to make your voice heard.
  2. Become a STAR Local Advocate and work to meet with members of Congress when they are home
  3. Come to Washington, D.C., this February for the annual NFXF Advocacy Day.

NFXF Advocacy Day is scheduled for February 25-26, 2019. We hope you can join us—all 150 or so! It is a time to connect with policy makers and other Advocacy Day 2018 Group with Rep. Gregg Harperfamilies. We have fun, we learn, and we improve lives. It is not an exaggeration to say we can’t do this without you.

In the sea of voices in D.C., the voices from home and from those personally impacted are the most effective. You are the ones that are heard and cause action. Your involvement will make a difference for you and for families impacted—today, tomorrow, and well into the future.

If you haven’t been before, don’t worry!

We help you every step of the way when you get to D.C. Once here, we gather in the same hotel and have a training from 1:00 to 5:00 p.m. on Monday afternoon. The training covers what to do, where to go, what to say, and more. We strive to make you comfortable and at ease. We also schedule all of your meetings and coordinate with everyone else coming from your state and congressional district. If your meeting changes, we let you know. Additionally, if you want, we have experienced advocates to mentor you and be there for all of your questions and support.

Who

Anyone who wants to advocate for Fragile X families. We always have a mix of parents, grandparents, family members, doctors, researchers, and clinicians. Siblings and self-advocates are especially encouraged to attend.

When

Mon–Tue | Feb 25–26, 2019
Arrive by 1:00 p.m. Monday, February 25, through Tuesday evening, February 26, 2019.

Where

Washington Marriott
Wardman Park
2660 Woodley Rd NW
Washington, D.C.

Cost

$25 registration fee plus any travel expenses. The NFXF rate at the Marriott is $209/night.

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By | 2018-12-04T16:16:20+00:00 Nov 30, 2018|Advocacy, Advocacy Day|Comments Off on How to Advocate for Fragile X Families