Posted at February 7, 2012 | By: | Categories: 2012,Guest Submission | 1 Comment

A Mom’s Introduction to Advocacy Day

The following is a personal blog post written by Melissa Welin, Co-Founder of the Fragile X LINKS Group of Eastern Massachusetts giving an introduction to Advocacy Day through the eyes of a first time advocate. Melissa first attended Fragile X Advocacy Day last year and plans to be an advocate again this year.


First, let me say…if you are on the fence and you are letting your carrier anxiety hold you back just pop on over to the NFXF’s beautiful, new website right now and sign up. Do it real quick, don’t think. Just…do it. Advocacy Day is March 6th and 7th ((this year)) in Washington, DC.

advocacy.fragilex.org/ad2012/register-now/

OK, good! Yes, I know, you feel like vomiting 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 Foundation will have a series of web events/conference calls before Advocacy Day, 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. On Tuesday, March 6th starting at 1pm there will be training. 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 Congressmen know that this is a big deal for a citizen to take time and money and 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, 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 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 Congressman 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, it’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. 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 day wear for women.
  6. COMFORTABLE SHOES. Is that enough emphasis for you? The halls are marble, in between you will be walking very, very quickly on sidewalks. These are hard surfaces and 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.
  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. Security is understandably 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, 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. 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. They provide a bus TO Capitol Hill but you are responsible for your transportation back to the hotel. It is Metro accessible and you should, by all means, feel free to take it for the adventure but plan in advance to take that cab. It’s not expensive and you will probably be really, really happy that it’s an option.
    • A 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 the e-mail listserve or…say…an amazing blog! If you do meet with your Representative or Senator personally, most meet 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 5 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 Fragile X) 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 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 fragile x. 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 8 hours of uninterrupted sleep!)).

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!

The Foundation will have a template you can use so you are asking for the same things the rest of us will be asking for. If there are people from your state going they can use those letters to get appointments to speak with your representative when they would not otherwise be able to do so. If there are no other people from your state going the Foundation will deliver them. Getting a handwritten (or typed but signed), physical letter will make an impact that an e-mail will lack. 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??