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!

Summit- Day One






Even though Monday was a “short” day in Washington D.C. and the 2014 Advocacy Summit, that didn’t mean that we didn’t get a lot accomplished!

Registration was open beginning at 10 am, but programming didn’t start until 3, giving the 300 of us in attendance time to trickle in from all over the country.  Summit kicked off with a session highlighting “Research for a Cure,” by John O’Shea, MD Chief and Molecular Immunology and Inflammation Branch Scientific Director of the NIH & NAIMS. You can learn more about Dr. O’Shea and the research here. Following the presentation, parents attended an information session with their children for the Kid’s Summit, and had a short break just to recharge a bit before training began.

After the kids (k-8) were settled into their summit, the adults and high schoolers broke into 3 groups for preliminary training. First time attendees had their own session entitled “Advocacy 101.” Intermediates who had attended less than 4 summits attended an interactive training that simulated acting as a member of Congress. Since this is my second summit, this was the session that my older son and I attended while my younger son participated in the kid’s summit activities. The simulation was designed to provide insight into the high-pressure world of your congressman, and help advocates better understand the issues on the other side of the table. By simulating their experience, and getting personalized feedback after every round of decision making, we got a glimpse of the environment that our congressmen are operating within. Seeing things from their side helped us to target our approach for meetings on the hill coming up today and Wednesday. Knowing what factors might hold them back from getting aboard OUR cause is a valuable insight, and will help us be more effective in countering some of the arguments that may not even be verbalized in our meetings.  The third group included all the “advanced” attendees who had been to multiple summits. Christopher Kush of Soapbox Consulting led this group through a presentation on 5 introductions that would serve them well in a variety of advocacy situations.

After the evening trainings concluded, we attended one of the new features this year, a teen meet-and-greet. This was a semi-structured, informal session designed to allow the high school aged kids a  chance to socialize and meet other teens from around the country. Parents were invited as well, but separated into tables for adults so that we could have the opportunity to meet other parents with JA teens. I was excited to see this new session, as previously teens have been a little left out in programming, but have so much to say and do! Last year in our meetings on the hill, kids and teens stole the show more times than not, when allowed to share their very powerful stories. I was happy to see the Arthritis Foundation beginning to tap into their resource!

All these events made for a late night, and we are up early this morning. Breakfast programming starts in less than an hour, but I wanted to get a quick post off to let you all know what we are doing here in D.C., and hope that you will consider joining us next year. There is strength and power in numbers! Even if you can’t be here, you can still attend and make a difference through the Virtual Summit.  Click on the hyperlink, and you can see all the great pictures and tweets from advocates in attendance, but you can also click on one (or all!) of the three “TAKE ACTION” buttons to send a form letter to your congressman supporting our efforts here. Don’t forget!  Every action counts. Together, we can make a difference.


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