Reflections on Serving as MDA National Ambassador

5 Second Summary

MDA Ambassadors play an essential role in furthering MDA’s mission while representing and empowering the neuromuscular disease community. Quest Ambassador Guest Blog series provides a platform to share their personal stories, perspectives, and experiences.

Amy Shinneman speaking at the MDA Clinical and Scientific conference

Amy Shinneman speaking at the MDA Clinical and Scientific conference

In some ways it seems the last two years have flown by, and I was just barely getting started serving as a National Ambassador for the MDA. In other ways, when I look back on the past two years, it seems like so long ago that I got the phone call asking me if I would be interested in interviewing to be considered for the role. It was certainly something that I had thought about, and hoped would happen in the future. In fact, ironically, just minutes before receiving that call, I had just finished writing in my journal. I had written that becoming a National Ambassador for MDA was a long-term goal for me. It was a very surreal moment, so much so I kind of glanced around to make sure I wasn’t being pranked!

I was ecstatic to accept the role after being interviewed, and told the role was mine if I wanted it. I tried to keep my cool as I assured Scott, who leads the ambassador team at MDA, that I didn’t need to run it by my family before accepting because they already knew that it was a huge goal of mine. There was really no question that they would be supportive of me in this role. I can specifically remember the response of my son who is off at college. I sent him a text with my good news, and he said, “no one is more prepared for this role than you mom!” My supportive husband and children were certainly a consideration when accepting this role. They were a huge part of my success!

Jaime Shinneman, Mary Fiance, Amy Shinneman, and Scott Weibe (left to right)

Jaime Shinneman, Mary Fiance, Amy Shinneman, and Scott Weibe (left to right) at MDA Clinical and Scientific conference

Starting out, I attended the 2022 MDA Clinical and Scientific conference in Nashville, TN. That was a standout moment for me as National Ambassador. I was introduced by Dr. Donald Wood to a crowd of hundreds where I had the first opportunity to share my story. Equally as memorable, was immediately following when I got to present Dr. Carsten Bonneman with MDA’s first ever Legacy Award for Achievement in Clinical Research. Dr. Bonneman is a leading researcher for my type of Muscular Dystrophy, Bethlem Myopathy. That was truly a privilege and an honor to be able to meet him on that trip and present this well-deserved award to him. I was also able to meet many of the MDA staff, which was wonderful. It was an incredibly special time for me, and one I will not soon forget.

Amy Shinneman participating in the Shamrock Campaign

Amy Shinneman participating in the Shamrock Campaign

From there, I stayed involved by making countless videos in support of MDA’s many campaigns including the Shamrock and Be Their Muscle campaigns. I visited various locations in my area that were selling the Shamrocks. I like to be able to thank people in person for their support when I am able. In my opinion, nothing beats being face to face and making those connections! Showing up to different Burn Boot Camp locations in support of the Be Their Muscle events was a highlight as well. I participated in my first Muscle Walk surrounded by family and friends; and had a surprise visit from MDA’s National Spokesperson and running back for Buffalo Bills, Nyheim Hines! Such a fun day.

Also, during these past two years my husband and I have run two marathons as a duo bike team, running with MDA’s Team Momentum for one of those marathons. We were able to raise a large amount of money for the MDA through doing the marathons which included the Indianapolis Monumental Marathon, as well as the Boston Marathon this past April.

Who could forget my moments each Monday sharing a quote from my weekly blog Humbly Courageous, combining that with my Motivational Monday segments for MDA every Monday morning! I have had a lot of fun doing that and will miss that for sure.

Amy Shinneman after speaking with firefighters who belong to the International Association of Fire Fights (IAFF)

Amy Shinneman after speaking with firefighters who belong to the International Association of Fire Fights (IAFF)

Speaking at the Chicago Toast to Life Gala, was an evening to remember. It was a lively evening, and I even ended up leaving with one of the paintings that was auctioned off painted by the artist who had painted it live that evening.  A great souvenir from my time as National Ambassador, which hangs in my living room!

I had the privilege of speaking with some of our awesome fire fighters, who belong to the International Association of Fire Fights (IAFF), as well as visiting a fire station or two in my area to again thank those who support MDA. Joining the MDA Summer Camp in my area this past summer for fire fighter day was a highlight as well. Speaking to the campers in person was such a great connection for not only them, but me too. I certainly left there with a smile on my face!

Amy Shinneman with MDA National Youth Ambassador, Leah Z.

Amy Shinneman with MDA National Youth Ambassador, Leah Z.

When I set out on this journey as National Ambassador, making connections with others through sharing my story was one of my main objectives. I have met many great people living with neuromuscular disease, as well as some of their families. These connections have been life changing for me and motivate me to continue to share my story even after my role as an MDA National Ambassador is over. Meeting fellow National Ambassador Leah and her family has been a highlight as well. Our families will be friends for a long time to come! Meeting the talented Mindy Henderson was a star struck moment for me. I have admired Mindy and her work from afar for a long time, so meeting her in person and advocating together in Washington D.C. was amazing! There have been many other great moments sprinkled in between!

Amy Shinneman and Mindy Henderson, MDA's Director, Quest Editor in Chief

Amy Shinneman and Mindy Henderson, MDA’s Director, Quest Editor in Chief

I would like to thank all of the MDA staff for their hard work and dedication to changing the lives of those living with neuromuscular disease. Each of the staff I have worked with during this time have been so kind, and I am forever grateful to have had this opportunity. I will always cherish this special time in my life. Now, I will join the many greats in the “Former National Ambassadors Club”. I’m signing off for the final time as MDA National Ambassador with an extremely grateful heart. I hope you will continue to follow my journey because while my role is ending, I’m just getting started! I will continue with my weekly blog posts on, and rumor has it there could even be a book in my future!


With love and gratitude, Amy.

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