2014 Advocacy Summit- Recap

My intent was to blog every single day of the summit, giving you a recap of everything that we had done and taking you through, session by session, the things we were doing.

That was a lofty goal.

The summit is very short, and there is A LOT packed into a very short time. Between the travel and the activities, I just didn’t have it in me to do a great write up every day- so here is the summary.

Monday:  Although registration was available early in the day, programs didn’t start until time for standard check in at the hotel. There was a great speaker from NAIMS and the NIH who talked about research for a cure, and strides they are making, followed by a parent orientation for those with children attending the kids summit. After a very short break, the adults were divided into three separate training sessions, depending on advocacy experience, while kids in K-8 had their own age appropriate training session. The evening wrapped up with a  teen meet-and-greet which was a new feature of the summit.

Tuesday is where the real nitty-gritty work started. Breakfast began at 7:30 am, and all delegates attended and met with their respective state coordinators. One advocate from each state volunteered (or was selected) to be the point person from their state, and to be the liaison between their group, Soapbox Consulting, and the AF. Scheduled meetings on the hill with congressional members and their staff are notorious for having last minute changes. Using Soapbox (we even got to use a cool free app on our phone) and one point person for each state really helps keep everyone organized and informed through the potential chaos! The breakfast was a nice time to socialize, meet up with old friends and make new ones, as well as to touch base with the state coordinator.

After breakfast, we were addressed by Ann Palmer, the new CEO of the Arthritis Foundation. At that time, all the kids went back to their summit to make takeaway letters for their congressmen, why the adults stayed together for additional training, specific to the three initiatives we would be presenting. If you think that was a dry and boring part of the summit, you would be wrong! The AF (specifically Laurie Markle) and Soapbox (Chris Kush) did an amazing job of keeping it entertaining by presenting the rationale behind our “asks” with short skits performed by a few of the advocates attending. By the end of the session, we had a very clear idea of why these initiatives were important, what to ask for and how to ask for it when we finally got into the meetings with our elected officials.

It was a good thing too, because there was no time for cobwebs to form. After a quick box lunch, the buses started running up to the Hill. Tuesday was primarily the “Senate” day, although a few delegations had a meeting or two with House Members as well. For Senate meetings, everyone from the state came together, and visited with their Member of congress as a united front. Each delegation had a chance during lunch to work together, and find the “comfortable place” for the rhythm of their presentation. In our group, we chose to let the kids tell their arthritis stories, followed by the adults with arthritis. After we had secured a personal connection, 3 of the adults chose one predetermined “ask” each, so that one person didn’t monopolize the conversation, and so that we all didn’t have to be “experts” on everything. Working with a group (especially with a plan) made talking to the staff and/or members much easier. Many times the meetings were not scheduled with the member of congress, but rather with their HLA (Health Legislative Assistant) or other staff member.


The busses ran between the hotel and the hill every half hour until all the various meetings were over- about 6:15 pm. Those with late appointments got back just in time for dinner, which included more guest speakers, and presentation of various AF awards to those in attendance (and yes, that includes yours truly, for being a “platinum ambassador!”) By the time we got back to the room, we had logged in a 14 hour day. Now you know why there was no blogging!

Although technically Wednesday was the last day of the summit, and a “half day,”  that didn’t make it any less busy. State coordinators checked in with Soapbox early to get all the schedule changes, and there were a bunch! Breakfast was a time to reconnect with the delegations from your area, and to plan the rest of the day. We were given the packets of information to take to our Representatives, and the schedule to meet the Representative (or their staff member) from our personal district. In some cases, we were also chosen to attend additional meetings outside of our district, so that no advocate would need to attend a meeting alone. We were also given packets to drop off at other Representative’s offices from districts across the state, where there were no meetings scheduled, so Wednesday meant a lot of walking!  Sometimes we got lucky. After going to an office and stating that we were volunteers with the AF and would like to drop off the packet, or speak with the HLA, if available, we actually got an impromptu meeting! Our family did six cold drop-offs, and actually got two meetings, with two firm commitments on the DoD request. Since we divided the drop offs within our delegation, we were pleased to hear that some of the other advocates had good luck like ours as well.

Wednesdays meetings and drop-offs were scheduled from 9am to 5 pm, so it was another long day, but very worth it. It was spent doing exactly what we came here to do, which was to meet with our elected officials and staff, let them know what was important to us, and how they could help. This is at the core of what advocacy summit is.

Today, although the summit is officially over, my boys and I are headed BACK to the Senate buildings to meet face to face with our senators for a bimonthly constituent coffee. We will have one last opportunity to meet with our officials and let them know that we are serious about these issues. We definitely plan to take advantage of it.

So there you have it- that is summit in a nutshell. Are we exhausted? Oh yes… but it feels good knowing that we are making difference, and at minimum, are making our voices heard. No matter how experienced or inexperiences, no matter how old or how young, you can make that impact too.  I hope you will consider joining us next year!

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  1. Thanks for doing this. You are really and advocate

  2. Sheri Davis says:

    Thank you for your summary and your advocacy! I have and will continue to communicate with my US Rep re: the HBs. You’re an inspiration.

  3. That was a very productive week . I miss attending conferences 🙂
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  4. Sounds like you guys had a crazy busy week but what a great experience to be right down in the trenches lobbying for your cause. Kudos to you guys on your efforts!

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