What Does MDA Mean to Us?

Over the last year, Chris, Katie and I have really been more intentional about helping MDA and other organizations. We know that financially we are not in a position to give as much as we would like, so we give our time to help out when we can. In the process, we get asked why we do it or how has our life benefited from the organization. It’s always easy to give out a quick answer that is vague, but after attending the recent Cincinnati MDA Muscle Walk, a shirt they gave out gave me a better answer, at least for MDA.

What has MDA meant to our lives?

In the early years of Chris’ life, they gave knowledge, support, and assistance when needed. Guiding the family through new territory. Then, for a while in his teens and young adult life, Chris stepped away from MDA feeling that, up to that point, they had helped him as much as they could. We would still donate money and any equipment able to be reused, but we were not looking for anything in return. Then in December 2016, we heard about a drug that would change the lives of children with SMA. We were so happy for these families and glad to have had a small hand in donating small bits of money over the years that helped with the research for this drug. But in January 2017, we found out this drug would be available to adults as well. It was just not known what benefits an adult would have from the drug. But we were on board from the start, no matter what the results were. Now a year into the treatments, we are seeing results that just four years ago we did not think would ever be possible.

So, what does this shirt say and how does it change my answer?

Live longer

Grow stronger

Defy limits

Repeat

MDA has helped Chris and many others live longer. They do this by supporting research, having medical clinics, offering support to families, and creating environments where those affected by MD feel included and heard. The camps, I hear, are times that children with MD can really feel empowered as well.

MDA has helped Chris and many others grow stronger. They have been funding research that has brought about many new treatments and possibilities for those with MD. The knowledge gained from these many years of research keeps growing and maybe one day will lead to a cure for all types of MD and ALS.

MDA has helped Chris and many others defy limits. Those in the MDA organization have been able to help families learn that a MD diagnosis may cause obstacles, but it does not mean life stops. They give support and assistance to the families so they feel empowered to overcome the obstacles. Others may mentally put limits on what a MD person can do, but it is up to those with MD to defy the limits others have for them. Life is full for those with MD and defying limits becomes something they do on a regular basis.

MDA has repeatedly been there for Chris and others with MD over the 65 years they have been in operation. I strongly believe that they will continue the battle against all forms of MD and ALS until they have all been cured as well. MDA has, is and will repeatedly be a blessing for every family they encounter. Thank you, MDA, for all that you have done and continue to do for everyone affected by a MD or ALS diagnosis. Your continued support is well appreciated.