Unnoticed Progress

Jerry Lewis

Earlier this month a memory popped up on my Facebook page and it got me thinking. It was a post saying we were on our way to Columbus for the first doctor’s appointment to get started on our Spinraza adventure. That first appointment did not end like we hoped and left us a little disappointed. We were hoping to start it right away but we were told that there were going to be some challenges that needed to be looked into first. God had a couple of lesson for us to learn first: learn to be patient and trust His timing. They are lessons that we still struggle with. We want to tackle a situation head on, right away and see big results when we do. Yet that is not always how He works.

For instance, when I think about this Spinraza adventure that we are on, I would pin the start date back in January 2017 when we learned about it. Yet honestly this journey started long before then. God has been leading us on this adventure our whole lives and really even before that. Chris was born with SMA and that got his parents started on learning more and becoming advocates. They brought awareness to their family and community about SMA and MDA. They helped raise money to fuel the research needed to learn more about the various neuromuscular diseases (NMDs) that MDA supports. Which several years later brought Spinraza to our attention, a drug that came about because of some funding from MDA. (If you would like to learn the process of how a drug is developed please read this article. At the end, it gives a timeline of Spinraza's development.)

MDA was not a new organization when Chris and his parents started advocating. It started back in June 1950; 26 years before Chris was born. You can learn more about their history here. This journey of improving the lives for those with NMDs has been a long one that has had many ups and downs. This helps me take my focus off of our personal ups and downs and see the amazing work God has been doing within MDA and others with NMDs. 69 years ago, there was no Spinraza, Zolgensma, Exondys 51, Keveyis and Emflaza (drugs that have been FDA approved in the last 2-3 years for various NMDs) or even the level of research that there is today which includes “more than 180 research projects underway around the world” according to MDA executive R. Rodney Howell, M.D.

There were no multidisciplinary clinics that provide care from various types of doctors in one location or education for families then either. As their website states, "MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases through innovations in science and innovations in care."

Approach any family that has used any of the multidisciplinary clinics, community connections, research/trials, or drugs that MDA has had a hand in providing and you can hear stories of challenges and triumphs. Each day, family and neuromuscular disease has its own challenge, but that is why MDA exists. They are there to ease the heavy load and help challenges be overcome.

The innovations that MDA has provided did not happen overnight and they continue to evolve, just like our adventure. While I struggle with the speed of our journey, I look outward and see that in the scheme of MDA's journey, we are going much faster in our portion than their beginnings. It's humbling and inspiring. Also, both journeys have the potential of accelerating even more in the future. Chris will tell you that he doesn't notice a difference, but there are subtle differences in his strength. Also, we have heard of bigger differences in strength as more doses are administered. As for MDA and those they support, the years of researching are starting to turn into treatments that are changing lives. As researchers share their findings more NMDs are getting help to find better treatments. It is like a flood gate has been opened and all the years of struggling are finally seeing fruitfulness. Many of us do not even realize all of the progress that has been achieved over the last few years. It really is interesting see God working in all of this.

I am looking forward to seeing all the advancements MDA will continue to bring and the stories of life changes that will result from them. I pray for MDA’s continued success until every neuromuscular disease has a cure. Please join me in thanking MDA for all of their hard work over the last 69 years. Without their commitment to "transform(ing) the lives of people affected by neuromuscular disease," the adventure Chris, Katie and I are on probably would not have happened. We would also like to thank everyone that has ever helped MDA as well; be it financial, with your time, or with your prayers. Your help has truly blessed so many lives, more than we can even imagine.

I would be remiss if I did not add that MDA could still use your help. Finding new treatments, creating centers that families can come to for help, and giving children a chance to experience summer camp doesn’t just happen. It takes money and people willing to help out. If you can do either of those, check out their website or social media accounts (@MDACincinnati or @MDAOrg) for ways to do so.

We would love to have you join our Muscle Walk team (Chris' Cure-aiders) on September 21st as we come together with other families with NMDs to make a muscle and bringing strength to life for such a great organization.