When things don’t seem to go their way, people often find it’s easier to ignore it, mutter frustrations under their breath, share thoughts with friends, and post opinions on social media.
We have been there many times ourselves.
But other than blowing off steam to ease inner tensions, does any of that lead to making things better?
Not really.
That’s why we have worked hard to take control and focus our time and energy on sharing our stories, opinions and requests with the people who can help to improve our situation and get us what we need.
It’s all about activism and living as our own best advocates. We made a lot happen between March 8 and 15, where we connected with lawmakers at the nation’s capitol in Washington, D.C., and Michigan’s state capitol in Lansing.
The Washington, D.C., visits were part of the National Multiple Sclerosis Society’s Public Policy Conference (the first in-person event since 2020), and the Lansing event was the result of coordinating a proclamation with our State Senator.
The experiences were all-empowering and here is a snapshot (or 12) to highlight the work we did and the ways that you can empower yourself an MS activist. And if you want to hear all about it, be sure to listen to Episode 49 of our A Couple Takes on MS podcast “A Couple takes on 2 Capitols” on our website or wherever you get your podcasts.
3/8/23 • Capitol Hill • Washington, D.C.
11:15 a.m. meeting with Congressman Dan Kildee. This was our first meeting of the day, and it was with a Congressman we’ve developed a great relationship with over the years. Congressman Kildee has been very supportive of the NMSS and our advocacy efforts, and we was on board with everything we were proposing with the two issues we took to Capitol Hill this year (see images below).
What made this meeting even more special was that we were joined by Cynthia Zagieboylo, NMSS president and CEO, and Bari Talente, NMSS EVP of Advocacy and Healthcare Access.Our two issues in D.C. The first two days of the Public Policy Conference gave us insights into the above two issues to discuss with our legislators and members of their staff. The issues this year and our asks were: 1) Cosponsor the Air Carrier Access Amendments Act – H.R. 1267/S. 545; and 2) Support $22 million for the MS Research Program – MSRP – at the Department of Defense and $7.5 million for the VA MS Centers of Excellence in 2024.
**Of special note: within days of meeting with Congressman Kildee, he had signed on as a co-sponsor of H.R. 1267 and signed onto the FY24 appropriations letter to support the MSRP and VA Centers for Excellence Funding. Rolling through the halls of Congress. After meeting with Congressman Kildee in the Cannon House Office Building, we went through the tunnels to drop off an information packet to another Michigan member of Congress located in the Rayburn House Office Building. Yeah, we purposefully displayed the “MS” on the back of Jennifer’s power wheelchair.Cannon coffee break. Whew! With one legislative visit completed and packet delivered, yes, we needed to stop for a minute. Fortunately, the basement of the Cannon Building had a coffee shop AND a quiet of-of-the-way corner for us to breathe for a couple minutes (and share a chocolate chip scone and iced coffee).2 p.m. meeting with Edward Kim, legislative director for our Congressman John Moolenaar. For the past two years, we have only been able to meet with Edward virtually. What a great experience to finally meet with him in person! Fellow Michigan activist Pete Rigney, along with his mother, Marcy Myers (who took this photo), joined us in our very productive meeting with Edward, who asked a lot of great questions on behalf of Congressman Moolenaar.
While we didn’t have a meeting scheduled with our Congressman, something just as special happened on our way to his office: On his hurried trip to go to a vote, Congressman Moolenaar recognized us right away and immediately stopped in the Cannon hallway to shake our hands, embrace us and thank us for coming to D.C.! Final pause. Thanks to Caleb Bartes, a staff assistant for Congressman Moolenaar, escorting us in the tunnel under the U.S. Capitol Building that connect the House and Senate office buildings, we had time to rest in the Hart Senate Office Building before our final legislative meeting of the day. 4 p.m. meeting with Victoria Houston, legislative correspondent for Senator Gary Peters. This was a perfect way to end our day on Capitol Hill. Victoria was so welcoming and accommodating, and she was incredibly vested in the conversation with us. Lots of questions for clarifications, and she even offered great insights into the legislative funding process.
And how cool is this? As we were waiting for Victoria, Senator Peters quickly scurried out of his office on his way to another meeting but recognized and paused to acknowledge us and and thank us for coming to D.C. We realize this likely is standard practice for all D.C. politicians, but it certainly means a lot more when you know they actually do know who you are their constituents. Obligatory Capitol photo. It had been sooooo cold throughout the day that we spend all of our time in the office buildings and underground tunnels. Fortunately, as we were waiting for the accessible van to take us back to the hotel, we got this image with the Capitol behind us!
3/15/23 • Michigan State Capitol • Lansing, Michigan
9:40 a.m. meeting with State Senator Roger Hauck before the 10 a.m. Senate Session. What started with a simple request we emailed to Sen. Hauck’s office on February 6 led to him officially introducing a proclamation to the full Senate on March 15 to officially declare March 12-18 as MS Awareness Week in Michigan! In addition to introducing what became Proclamation 19, Sen. Hauck actually mentioned us, along with Jennifer’s caregiver, Jen (who took this photo), and NMSS Michigan Chapter President Tammy Willis and Board of Trustees Chair Helen Myers from the Senate Floor. This truly was a humbling experience, and we are grateful to Sen. Hauck for his continued support of our MS advocacy efforts.Superstar activism selfie. After the Senate unanimously adopted the proclamation declaring March 12-18 MS Awareness Week in Michigan, Jennifer and Jen seized the moment to snap this pic in the Capitol Rotunda.Parting pic. Because the Michigan Capitol Building always is worth at least a thousand words (or one really good picture).
Right now • Start your advocacy journey • Online
Sharing your stories and experiences with our elected officials demonstrates how such issues are impacting their constituents. We are encouraging you to take some time to consider joining us as MS activists. Learn more on the NMSS activism website.
2 Comments
You guys are special.
You are too kind, Frank! We get inspiration from all the awesome MS activists (like Frank Austin!). It’s always empowering to advocate alongside you in D.C.
You guys are special.
You are too kind, Frank! We get inspiration from all the awesome MS activists (like Frank Austin!). It’s always empowering to advocate alongside you in D.C.