The Speak Foundation Speaks Loudly: A Prelude to September in Chicago

I recently attended The Speak Foundation’s 11th Annual Conference. This event is for individuals with neuromuscular diseases and their families. We met in the beautiful city of Atlanta, for what turned out to be an exciting few days. This was also a fitting prelude to the upcoming National Limb Girdle Muscular Dystrophy Conference in Chicago.

My road trip to Atlanta brought many exciting opportunities. It also allowed me to take a side trip to a special place. I left Chicago early on Wednesday morning for Louisville, Kentucky. Growing up, I had been a big fan of Muhammad Ali. I had always wanted to see his museum in Louisville, so I made a beeline for the Muhammad Ali Center, and five hours later I was inside. It was amazing to see the history — a history that is about so much more than boxing. The civil rights movement was integral to the Ali legacy.

A painting of Muhammad Ali at the Ali Center. (Photo by Ralph Yaniz)

As I went through the museum, I saw one quote from Ali that really hit home for me: “Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”

Whether we are dealing with our own individual illness or with the bigger issue of finding treatments and cures, this quote resonates. Nothing is impossible!

From Louisville, I headed to Nashville. I spent the night in the small town of Lebanon, Tennessee. That night, we were hit by a storm with hail, lightning, and thunder. It seemed to me, as I slept that night, that the storm was a portent of things to come. We have to create some storms to effect change, and it looks to me like the climate is right for this change.

I arrived in Atlanta early on a Thursday. With some free time, I went to Emory University to meet with a researcher who had been funded by the Muscular Dystrophy Association. This work focused specifically on my illness, LGMD2L. I had donated muscle cells to this effort, and it was exciting to see the lab and get updates on the research.

The most exciting part for me was seeing my muscle cells on the computer screen. I was able to see some interventions and cell responses. It was great to see that my specimen was helping scientists better understand this illness. We also discussed doing a deeper study of my family (I have six siblings) because of the nature of my specific mutation.

This work could potentially lead to the next step, where we can actually test interventions. My column on clinical trials highlighted the importance of understanding the mechanisms of cellular functioning before we can look for treatments. And I will be ready for the next steps when they come.

The conference itself was spectacular. I met some great people and learned about a wide variety of muscular dystrophies, some of them very rare. The commonalities were strong, however, and I realized that all of us at the event continue to exist in the realm of “Living, Learning, Thriving!” I’ve talked about the need to find our communities, and this was definitely a community where we all felt a connection.

Kathryn Bryant, founder and national director of The Speak Foundation, has been a visionary leader. This was the 11th year of the conference, and the success of this organization has emboldened Kathryn with two new initiatives.

First, she spearheaded the upcoming NLGMD patient conference in Chicago, along with other leaders. We are expecting between 300 and 500 people. Physicians and researchers will also come together to share information and discuss the great work that is happening in so many places. I am thoroughly convinced that events like this will move the needle and lead us to treatments and cures.

The other initiative relates to effecting positive change. While in Atlanta, I spoke to conference participants about how to build an effective advocacy program. I will have the opportunity to do a shortened version of this at the Chicago conference. Kathryn’s vision will hopefully culminate in future Lobby Day activities on Capitol Hill.

I am excited for the future. I hope to see many of you in Chicago. The importance of community can’t be overstated. I look forward to seeing you there!

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