A patchwork of images including the American flag, the capital building, and fragile / handle with care stickers.

Mixing Advocacy With Travel in Washington, DC

Guess what I did? I took a trip to Washington, D.C., to advocate for a cure for spinal muscular atrophy (SMA) on Capital Hill. It was an incredible journey, but I gotta tell you, it was a bit complicated, especially with SMA. Let me share with you all about it and how I ensured travel safety during the trip.

The mission: push for a cure

So, first things first, advocating for SMA research funding in the Nation’s Capital was such an important mission. The NIH is where all the cutting-edge medical research happens, and we really wanted to push for more funding and support for our representatives to the NIH SMA research. This is how we can speed up treatments and, hopefully, find a cure.

The journey began with meticulous planning. I did my homework! Along with getting training for meeting with my representative’s staff in their offices, I researched the latest SMA research developments and other issues I wanted to speak about with my congresspeople. The more I knew, the better I could advocate.

Discussing SMA research with my representatives

My main reason for my trip was my scheduled meetings with my local representatives. We discussed SMA research funding, and I made sure to highlight how urgent this is and how it impacts people with SMA along with other unmet needs of our community.

I also joined up with a great SMA advocacy group. They're a fantastic resource and had a lot of experience in coordinating this trip to Washington, D.C. Their guidance and resources were invaluable.

Sharing my story

Of course, I didn't forget to share my own story. Personal experiences really hit home with policymakers, so I shared how SMA has affected me and my family, which seemed to make a real impact.  I got several intelligent questions from the staff I met with, and I was more than happy to answer and help promote awareness.

Travel safety tips

Now, for the travel safety part, which mobility aid users are always concerned about:

Hotel tips

I made sure to let the hotel know I needed a mobility accessible room. I looked for features like wider doorways and roll-in showers. I also checked for nearby medical facilities and pharmacies, just in case. The hotel had assured me that I could get my hoyer lift under the bed, but unfortunately it was on a solid platform and the hoyer could not work with it. I contacted the staff and requested accommodations of lifting the bed, but when that could not be arranged, they provided me a roll-away bed that fit my hoyer fine.

Air travel tips

When it came to air transportation, I informed the airline about my specific needs when booking my flight. Once I got to check-in, I checked all my medical bags and my hoyer for free and requested my chair be gate-checked and told the attendant I would need 3-4 strong people for transfer onto the plane. They aided with boarding, in-flight stuff, and unloading back into my chair after the flight. 

My chair made it fine, but unfortunately my hoyer was bent during travel. I could use it, but I took the safety risk in doing so. The airline is handling the damage with their insurance company who contacted me quickly to get it done. 

Accessible taxis and ride share

In DC, I used an accessible Taxi to get to my hotel and it wasn’t much of a wait at all.  DC also has ride-share companies that have accessible vehicles!

Accessible tourist spots

D.C. had plenty of accessible tourist spots, like the free-to-experience Smithsonian museums, the National Mall, and the U.S. Capitol, and they had accommodations for people with disabilities.  I was even able to take an elevator up to the feet of the Lincoln Memorial, so I have great photos of me next to a giant marble foot! There are plenty of accessible transportation options and rentable scooters and electric bikes all over the city. 

Charge your wheelchair and go!

Just make sure to charge your wheelchair before going out on a long excursion.

So, that's how my trip to Washington, D.C. went down last week. Advocating for a cure for SMA was an eye-opening experience, and it's incredibly important. With careful planning and a dash of adventure, I was able to make it a safe and enjoyable trip. I believe my voice made a real difference, and it's great to know we're all in this together to find that cure for SMA.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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