I recently had a meeting with an executive from the Kansas City Region of the Muscular Dystrophy Association (MDA) to discuss the possibility of my giving a Roll Models talk at some of their fundraising events. The meeting went very well, and it looks like there will be a few events throughout the year where I will speak to help raise money. This makes me extremely happy, because MDA has done so much to help me and my family over the years. Before I went to college I did a lot of fundraising for them, even raising thousands of dollars over my 4 years in high school. Once I went to college however, I just didn’t have the time to continue working with them, so for the last 8 years or so I have not helped them much. I am glad that I now not only have the time to work with them again, but also a skill set that could really benefit their cause. Not only does this help me pursue my mission to help others, but I also think it is extremely important to give back to the people who help you. You need to pay back the generosity that has been showed you, in order to also pay it forward to the next generation of people who need this organizations help.
I have briefly discussed some of the things that MDA does for families of neuromuscular diseases in a previous post, but I want to expand on that now. In addition to providing the MDA clinics that I have already mentioned, they also pay for research to treat and cure all 42 neuromuscular diseases. They provide support groups for disabled people and their families, and they hold MDA Summer Camp for a week every year so disabled children can experience what camp is like. They do all of this, and so much more, thanks to the donations of people and companies at their fundraising events throughout the year. It is by working at these events to help raise money that I realized the importance of paying it forward, and it is also where I got my start in public speaking.
I first started working with MDA at the mature age of 4, when I was chosen as the goodwill ambassador for the Fort Wayne, Indiana region. This basically meant that I was the face for MDA at their functions, and I would be at events to be the sweet, cute little kid that would smile, maybe say a few words, and pull at people’s heart strings to get them to donate more money. I did this same job in the South Bend, Indiana region when my family moved there until I was 7 or 8, when I grew out of the cute kid stage. These fundraising events were my introduction to motivational speaking, and they showed me how my physical situation and a well delivered message can be very powerful in helping people. Even after I was too old to be goodwill ambassador, I still helped raise money at a few events every year by telling my story and how much MDA had helped me. One of these events was the Jerry Lewis Labor Day Telethon.
It was at the Telethon one year when I was about 12, that I realized how important it is to give back to the people who helped you, as well as paying it forward to help others. I was sitting in the Fox 28 television studio watching the Telethon on TV and waiting for my interview, when they started playing the annual in memorium segment. This is a slide show of all of the people in your region that died during the year due to complications from neuromuscular diseases. Naturally, it is a very emotional segment, complete with sappy music, but it is a powerful tool for generating donations. As I watched it, I noticed that very few of the people pictured were older than me, and remember I was 12, and almost no one was over 30 years old. Even more unsettling was the number of children under the age of 4 that were pictured. I thought to myself, “Will I be on this clip next year? The year after?” I decided right there that that would be unacceptable, and I would do whatever I had to to not be on this segment any time soon. Then an even scarier thought surfaced in my mind, “What if my brother or sister have a child, and God forbid, they have my disability?” Having lived through the difficulties of maintaining a happy, successful family with a disabled child, I could not let that happen to my siblings. I knew that the only way to make sure that neither of these things would happen was to find a treatment and cure for my disease, and that in order for this to happen any time soon, there was a need for more funding. I realized that by helping to raise money for MDA, I could simultaneously pay back everything they have done for me, and pay it forward to ensure that future generations of children do not end up a picture on a slide show before they even get a chance to live.
It was only after this little epiphany that I really understood the importance of what MDA does. Now, I was always aware of how much they had helped people and that was great, but the way they really help people is by funding research. It is only through clinical research that we will keep young faces off of that slide show. Having been one of the lucky few who managed to live to adulthood and experience life, I knew I had to do everything I could to raise money so others could have the same opportunity. It was the only way I could ensure my future nieces and nephews never end up on that segment. I do not want anyone else to have to go through all of the pain, struggle, and hardship that I have had to endure due to my disability. That is why I have such a strong passion for helping MDA, and it is why I am so happy to donate my speaking services for their fundraising events over the year.
I apologize if I got up on my soap box for a minute there, but this is something that I am extremely passionate about. Not only helping MDA, which I hope you will all support in any way you can, but more so the notion of paying forward the help you have received throughout your life. It is up to us today, to make sure that our future loved ones will not have to face the same obstacles that we have. If nothing else, I hope my words will make you think about things the next time someone asks you to donate to their cause. Instead of staying on autopilot and immediately saying no, ask yourself, “Would I pay this amount to ensure my grandchild is healthy/well fed/literate?” I also hope you all will select a cause you are passionate about and support it in any way you can. Not only will this create a better future for your children, but you will also find that giving of yourself this way brings happiness to your life.