NFXF Advocacy Day

Advocacy Day brings together families, self-advocates, siblings, caregivers, clinicians, and researchers united in advocating for the Fragile X community and advancing our collective Asks.FA

The day on the Hill can be an active and sometimes unpredictable experience. You have the option of taking a bus with fellow Advocates from the hotel to the Hill. We will take a group photo on the Capitol steps — rain or shine! From there, meetings begin.

Be prepared for:

• You may walk long distances between buildings.
• There may be times when you need to wait in security lines or outside of offices.
• Busy, crowded, and noisy hallways, especially when many groups are visiting.
• Short, fast-paced meetings, sometimes held in small rooms or even in the hallway.
• Sharing your story with staff or Members who may ask follow-up questions.

While many participants find the experience empowering, this environment may be challenging for some. We encourage individuals and caregivers to consider these factors when deciding whether attending advocacy day is right for you.

Advocacy doesn’t only happen on Capitol Hill.

You don’t need to travel to Washington, DC, or be a policy expert to make a difference. Here are practical ways to take action from anywhere:

Meet with Lawmakers Locally: During recess, members of Congress return to their home districts. Request a meeting at their local office to share your story and highlight how Fragile X impacts your family.

Bring your State Fact Sheet and the NFXF Federal Research Funding & Legislative Policy Priorities as meeting aids and leave behinds.

Attend Local Events: Sign up for your legislators’ newsletters to learn about town
halls, festivals, and community events they may be attending. These are great opportunities to raise awareness and build relationships.

Bring Fragile X Awareness Cards to share.

Invite Lawmakers to a Community Event: If you’re hosting, organizing, or involved in a local program, such as a school activity, therapy session, or support group, consider inviting your legislator. Seeing the impact of Fragile X firsthand can leave a lasting impression.

Respond to NFXF Call-to-Action Alerts: When important legislation is introduced, a quick email or call can help ensure the Fragile X community’s needs are considered.

Regularly Update Your Legislators: Email or call to share important updates about Fragile X; a short, friendly message makes a difference. You are developing a relationship, and it’s nice to check in to share without making an ask.

Include the latest NFXF Advocacy Newsletter to keep them informed.

This information on practical ways to take action from anywhere can also be found in the June 2025 NFXF Advocacy Newsletter.

The Royal Sonesta Washington DC Dupont Circle
2121 P St. NW
Washington, DC, 20037

The special room rate ($189 + taxes/fees per night) is available until January 29, 2026, or until the NFXF group room block is sold out, whichever comes first. Book Now.

The closest airport to The Royal Sonesta Washington DC Dupont Circle is Washington Reagan (DCA).

The hotel does not provide a shuttle.

Consider utilizing ride-share options such as Uber or Lyft, or find more public transportation options here.

Self-parking is available at a rate of $61 per overnight stay. The daily rate for non-overnight parking is $21 per day.

All available amenities and policies can be found on their website, scroll down to Hotel Details.

You may wear casual, comfortable clothing. You may want to consider wearing layers.

Please wear business professional attire — think suits, dress pants, dresses, or skirts. We will be providing t-shirts to wear under your suit jacket or with your dress pants or skirt. You may want to consider wearing easily removable layers, as you may be going in and out of buildings throughout the day.

Hill Day requires a lot of walking, and you should be comfortable! Itʼs OK for your footwear to be comfortable.

Yes! We are hosting a Zoom call designed for new advocates. This will be a time to ask any questions you may have. All advocates are welcome!

• When: February 11
• Time: 7:30 PM ET / 6:30 PM CT / 5:30 PM MT / 4:30 PM PT
• Register now.

Yes! Registered advocates will receive an email with information about the on-demand training once it is available (mid-February). It should take 20-30 minutes to complete. At a minimum, one individual per household must complete the training, but we encourage all advocates to complete it.

Telling your story is the most important part of Advocacy Day. Please view or download “The Importance of Telling Your Story” to help you think about how to concisely craft your story. Remember, it is important to share the celebrations and challenges that come with Fragile X.

Yes, bring a photo or prepared Advocate leave-behind beforehand to help you tell your story — including lots of pictures that show your life with Fragile X! Also bring one or more copies of your state’s fact sheet.

Be sure to include your name and address on your advocate leave-behind. You can create an advocate leave-behind in Microsoft Word or create a collage online with your photos through websites such as Walgreens, CVS, and Canva (each of these offer print options as well).

Not sure where to start?  See examples here (the PDF also includes a how-to using the Walgreens print service).

Consider printing a few so you can leave one with each Congress member’s office you visit.

We created individual state one-pagers to help introduce someone to Fragile X, including the number of affected constituents who are currently residing in that state. Download your State Fact Sheet.

In addition to a prepared Advocate leave-behind, consider bringing:

• Water, snacks, beverages.
• Comfortable shoes.
• Adults should have photo identification.
• Any other personal support items you may need throughout the day.

Monday, February 23:

• 12–1 PM: Lunch (provided by the NFXF), Registration check-in
• 1–5 PM: Training
• After 5 PM: Dinner is on your own. There is a restaurant in the hotel, and there are several options nearby.

The NFXF provides a bus from the hotel to the Capitol, leaving at 7:30 AM for our group photo at 8 AM.

• 7:10 – 7:30 AM: Board buses to Capitol Hill
• 7:30 AM: Buses Leave
• 8:00 – 8:15 AM: Group photo at Capitol Building Steps
• 8:15 – 8:30 AM: Depart to scheduled meetings, which will be provided to you no later than Friday, February 20
• 9:00 AM – 5:00 PM: Scheduled Capitol Hill visits

No, there will not be a group tour. This change is designed to help all participants have a successful Advocacy Day.

We are an inclusive organization, and our goal is to ensure that all advocates have the best possible experience. By adjusting the schedule and providing a later start time with fewer transitions, we are creating a more accessible and supportive environment for everyone.

This adjustment also allows advocates to bring snacks and drinks in their bags for the day, which was not previously possible due to restrictions when entering the Capitol.

Transportation back to the hotel is not provided due to varying meeting times throughout the day. Many utilize ride-share options such as Uber or Lyft.

Yes, however, we ask that tours do not conflict with your scheduled meetings. You will receive your tentative meeting schedule on the Friday before (2/20).

If your travel schedule permits, here are some tour options you can arrange on your own.

• U.S. Capitol Visitor Center
• House of Representatives Tours
• Visiting the Capitol
• 23 Free Self-Guided Washington DC Walking Tours

There are numerous dining options (see next FAQ) available for breakfast, snacks, or lunch. As a reminder, there is a security checkpoint each time you exit and then re-enter a building. Please arrive early, when possible, for meetings, as there may be a line for security.

There are numerous options available in the Capitol visitor center and in each of the various office buildings.

• Capitol Restaurant
• Food in the Capitol Visitors Center
• Senate Restaurants
• Restaurants near Senate and House Office Buildings

Yes, the following are items that are restricted:

• U.S. Capitol Visitor Center — Prohibited Items
• House & Senate buildings prohibited items:
  • Bags exceeding the size of 18″ wide x 14″ high x 8.5″ deep.
  • Firearms including replica guns and ammunition.
  • Weapons (to include but not limited to): Black jack, sling shot, sand club, sandbag, knuckles, electric stun guns, knives (with blades longer than 3″), razors, box cutters, martial arts weapons or devices. Knives with blades 3″ or less are permitted.
  • Explosives and explosive devices including, but not limited to, Molotov Cocktails, components of a destructive device, and fireworks.
  • Pointed objects including, but not limited to, knitting needles, letter openers, or other pointed objects deemed a possible threat. Pens and pencils are permitted. This restriction does not apply to staff.
  • Sealed envelopes and packages.

Yes, keeping in mind that meetings may continue until 5 PM. Please schedule your travel to allow sufficient time to return to the hotel and then proceed to your transportation.

You may check your luggage with the hotel while attending your meetings. Be sure to allow plenty of time to:

• Check your bag in the morning before the bus departs at 7:30 AM.
• Return to the hotel to collect your bag before heading to the airport.

Our partners at Soapbox Consulting schedule all meetings. Registered advocates will receive an email with their tentative (subject to change) schedule on the Soapbox mobile tool to the email provided at registration no later than Friday, February 20.

Any updates or changes will be available in real-time through the mobile tool, and a printed schedule will be provided on the afternoon of the training, February 23.

Please contact the Soapbox Help Desk at 202-362-5910.

Verify your cell phone is correct under “Your Settings” in your Soapbox mobile tool or contact the Soapbox Help Desk at 202-362-5910.

Contact the Soapbox Help Desk at 202-362-5910 immediately. They will contact the office on your behalf.

Please enter the specific question in the mobile tool feedback form for that meeting. If you are in a meeting, let the staff or member know follow-up will be provided to answer the question.

Please don’t leave the meeting until you know for sure they aren’t attending. Then please call the Soapbox help desk at 202-362-5910 to discuss the next steps. We want to make sure the staff doesn’t arrive for the meeting, sees no one there, and leave.

The NFXF is committed to keeping our attendees safe during their time at Advocacy Day by adhering to all local and state guidelines. While masks are currently optional, all attendees are encouraged to wear them if they prefer. We are closely monitoring the mandates regarding COVID-19 and will update our safety practices as needed.