Posted at January 23, 2013 | Categories : 2013 | 8 Comments

A Mom’s Introduction to NFXF Advocacy Day

Melissa Welin
Co-Founder of


First, let me say…if you are on the fence about National Fragile X Foundation Advocacy Day and you are letting your carrier anxiety hold you back, just pop on over to the NFXF’s beautiful website right now and sign up. Do it real quick, don’t think! Just… do it.  The dates are March 5-6, 2013 in Washington, DC.

Register Now!

OK, good! Yes, I know, the thought of speaking out on Advocacy Day might get you feeling nauseous, but it will pass, I promise. Now that you’re signed up to attend I thought I’d share a few helpful tips for a first-time Advocate.

  1. The NFXF will have a series of web events/conference calls before Advocacy Day, so watch your e-mail and attend. You will get to hear from Jeffrey Cohen, the director of government affairs & advocacy, and other team members about what to expect. They have been doing this since 2004, and they will have helpful information.
  2. NFXFAD 2012 Training Day

    There will be training on Tuesday, March 5, starting at 1:00 PM We will all sit in a big conference room, and we will be told what we are asking for and why. We will be given a chance to practice what it is we want to say. In advance, what you need to know is that the most important thing you will say during each visit is WHAT BROUGHT YOU TO DC. The staff and/or congressmember know that it is a big deal for a citizen to take time and money to visit them in DC. They already know this is important to you, and they will respect that. Tell them why you came…I’m guessing it’s because you have a friend or family member who is affected by fragile X syndrome, one of the other FXDs, or maybe both.

  3. Bring a picture(s) of your friend or family member. Some people leave copies, some do not. That is up to you. What we did was show the picture, talk about Caleb, make “the ask” (fancy advocate speech, aren’t you impressed?), and then we moved on to the next appointment. The day after we returned from DC, we e-mailed the staff members for both of our senators and our congressmember, and we included a copy of the picture in the e-mail. It saved us from having to print and carry them and it put a face to the e-mail. A really cute face.
  4. Bring a business card. You can use a print-from-home template if you don’t have one. You can use a professional one too if you have it; that’s up to you. You just need to have some way to leave them your contact information. They will give you cards in return. You need them for the e-mails you will send when you get home.
  5. MA Advocates with Senator Scott Brown

    Think about attire. The training and post-training dinner are casual. The day of the meetings is a different story. Dress in a way that shows the respect you have for the institution. Suits/ties for guys, suits and/or dressy daywear for women.

  6. BRING COMFORTABLE SHOES! Is that enough emphasis for you? The halls are marble, and in between visits you will be walking very, very quickly on sidewalks. These are hard surfaces that can leave you sore. This might not be the time to break out heels if you don’t normally wear them. This is definitely not the time to be breaking in new shoes! It might be a great time for some of those gel inserts, though.
  7. Think “layers.” It might be 30 and windy; it might be 70 and sunny…it might be both during the same day. Come prepared to shed layers.
  8. Understandably, security is high on Capitol Hill. Every time you enter a building you will need to clear security. Pack light. Ladies, empty your purses of all that crap that builds up, and just put in the essentials. The size of bags is restricted so really, think minimal and easy to search.
  9. Essentials:
    • ID. Duh, right?
    • Breath mints. You are going to do a lot of talking and your mouth will get dry. You can’t bring water through security but you can purchase it at some locations inside. However, you might not have time to stop or the good fortune to walk past them.
    • Cash. You might want to grab a cab to get from one location to another. Capitol Hill is Metro accessible and you should, by all means, feel free to take it for the adventure, but plan in advance to have the option to take that cab. It’s not expensive, and you will probably be really, really happy it’s an option.
    • Camera. The buildings are gorgeous, there is history everywhere you turn, you’re going to be seeing old friends, meeting with new ones or maybe even meeting old friends who you only know through Facebook or …maybe…an amazing blog! If you do meet with your representative or senator personally (most meetings are with a staffer), you will want photos of that, too.
    • SNACKS! You will be running from one side of the Hill to the other and maybe back again. There will be a lunch break scheduled and you can eat in the dining rooms, but you might not want to count on it. The dining rooms are crowded and finding a place to sit, after waiting in line, will likely eat up your entire break. We had five minutes to scarf down our food before we had to run for the next appointment. I should have just had a granola bar. We cannot bring food onto the House floor and we will be getting an amazing tour led by Representative Gregg Harper (who has a son, Livingston, with FXS) first thing in the morning. The House floor is not open to the public—this is a very special event and it is worth the trip all by itself. There are convenience stores located in the office buildings; I suggest trying to stop and grab a snack as soon as you can so you have it should you need it (I am so going to need it!).

Now that I’ve made this all sound like a hectic, exhausting day, let me just add that it is amazingly invigorating. At the very least, you will meet in the neighborhood of 100 to 150 parents, friends and siblings of kids with FXS. That alone is worth the trip…to be able to sit down to dinner and tell a funny story or brag a bit and not have to explain why it’s funny or brag-worthy. Also, after dinner, we usually congregate in the hotel bar to chat and maybe have a cocktail before we turn in early (*wink*wink*nudge*nudge*) so we are refreshed and energized for the next day. (As if FX parents would know what to do with eight hours of uninterrupted sleep!)

Advocates sharing their story

The meetings themselves are empowering too, though. You will have the ear of the man or woman who makes the decisions on funding for research, who write or vote for or against laws that can change your child’s life. A lot of the time Fragile X feels like this thing that happened to us, something that blew into our lives unexpectedly and tore apart everything we thought we were or knew. This is a chance to be an active participant in making things a little better for other parents and hopefully, yourself. And it feels so good!

What if you really and truly cannot come to Washington, either for lack of childcare or lack of funds but you really, really want to help? You can write letters! Contact your LINKS leader about what to write and by when. We still have to make appointments on Capitol Hill to deliver letters, so the foundation needs them in hand (typed or handwritten and personally signed) no later than February 18.

For a politician, a physical letter makes an impact that e-mail lacks. It shows commitment, it shows passion, it shows that you—the people who vote in the next election—care about this issue.

So, who is with me??