Join us for NFXF Advocacy Day 2019

On National Fragile X Foundation Advocacy Day, members of the Fragile X community descend on Capitol Hill to relate their stories about Fragile X-associated disorders, their families, and policies that support Fragile X families such as  research at the NIH and DOD, research and public health programs at the CDC, ABLE accounts for savings, facilitating the use of potential new drugs for treatments and a cure, health insurance, and policies that help improve the status quote for adult and families living with intellectual and developmental disabilities.

Overall, our goal is to be a voice of solutions, work across party lines, and improve the lives and opportunities of people living with Fragile X.

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 families. 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 DC, 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 take care of everything except getting you to D.C. Once here, we gather in the same hotel and have a training from 1–5 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.

Many individuals and families stay longer to see the sights. We are working on some special recommendations for our families, such as the 50th Anniversary of the Special Olympics exhibit at the American History Museum. Additionally, this year we are partnering with the Rare Disease Legislative Advocates for Rare Disease Week and may have some additional events that week to participate in. More to come on that.

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

Monday, February 25-Tuesday, February 26, 2019.
Arrive by 1 PM on Monday and leave Tuesday evening.

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. Self-parking is $48, but hotel guests in our room block receive a 20% discount on parking.