National Fragile X Foundation Advocacy Day

Feb 28 – Mar 1, 2017

National Fragile X Foundation Advocacy Day is an annual event sponsored and organized by the NFXF.

It is a two-day event in which:

  • You and your fellow advocates participate in a training session for the next day’s visit with your Members of Congress (MOC).
  • You and your fellow advocates go to Capitol Hill to share your story and advocate on behalf of the Fragile X community.

Parents, family members and self-advocates living with Fragile X are encouraged to take part in this powerful experience. Let your voices be heard in Washington, DC!

The next NFXF Advocacy Day takes place on February 28 – March 1, 2017, when Congress is considering the federal budget for the following year.

Your Participation Makes a Difference!

Over the past 10 years, the efforts of NFXF advocates have helped secure more than $325 million in federal funding for Fragile X research and programming.
These advocacy efforts have created new funding and attempted to increase federal spending at the Centers for Disease Control (CDC), Department of Defense (DOD), and National Institutes of Health (NIH).
The Achieving A Better Life Experience (ABLE) Act was signed into law on December 19, 2014 – NFXF advocates have been urging their MOC to pass the ABLE Act since 2006.

Hotel & Training

Training is held at our officially designated hotel, DoubleTree by Hilton Hotel, Washington, DC – Crystal City. We have a block of rooms at a discounted rate.
The special room rate will be available until February 7, 2017 11:59 PM Eastern or until the group room block that the NFXF has acquired is sold-out, whichever comes first.


When we organize NFXF Advocacy Day each year, we commit to several financial expenses based on the number of attendees. Because of increased expenses, we will be charging $25 per person 12 years of age and older who are planning to attend the training or the meetings with the MOC.

New for 2017: Advocacy Day Dinner

A group dinner for all registered advocates on Tuesday, February 28, after the training session. The group dinner will be held at the Doubletree Hotel in Crystal City.

Important Dates & Times

  • Hotel block is open.
  • Registration is not yet open. 
  • Training – Tuesday, February 28, 1-5 PM at the hotel.
  • Group Dinner for registered advocates – Tuesday, February 28, after training at the hotel.
  • NFXF Advocacy Day on Capitol Hill – Wednesday, March 1, 6:30 AM – 5 PM.

Make a Difference and Join Us!

We urge you to join us in our legislative advocacy efforts. Rest assured your voices, individually and collectively, will be heard loud and clear in the halls of Congress.

Your participation as a Fragile X advocate makes a difference!

Join us on Facebook! If you are on Twitter please use the hashtag #NFXFAD

If you have any questions about any aspect of NFXF Advocacy Day, email Jeffrey Cohen, Director Public Policy & Government Affairs, at

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