Letter to the Editor: Actions against ALS speak louder than words

I would like to take this opportunity to say thank you and commend Simpsonian Editor, Steffi Lee, for her article in the Simpsonian Sept. 4th discussing the Ice Bucket Challenge. She did an excellent job of pointing out the arguments associated with it and the importance of honoring a commitment.  Both raising funds and awareness is personal to me because I lost my niece to Lou Gehrig’s Disease when she was 17 –  although she began showing symptoms when she was just 11 years old. But what the Simpson Community does not know is that two of their very own has a personal connection with this disease: student Kady Groen and myself.

Many here do not know her story. Before she died, I was able to make arrangements with one of the most notable researchers in the world at UMass General in Worcester, Massachusetts.  He was able to harvest tissue samples from her brain and spinal cord and uses those samples in his research. He is currently using these samples to gain a better understanding of this disease and investigate possible therapies. He has informed us that tissue samples are a key to making the breakthrough discoveries needed for a cure. This is her legacy.

To date, Alex is the youngest girl ever and is the only identical twin in history to die from this disease. There is no way to describe or explain what happens when a person and their family go through this disease. It is unimaginable. It is horrifying that one of the people you love most in this world deteriorates and degenerates to a point where they can no longer speak, wrap their arms around you to give you a hug, or to even recognize them! Swelling due to bed rest causes skin changes and being unable to eat or move the jaw causes facial features to become sunken. It’s something no other human being should go through.

I would highly recommend those who want to learn more about the personal side and emotional impact of this disease to watch the movie, “Tuesdays With Morrie” by notable author and sportswriter, Mitch Albom, who had a college professor of his die from ALS.

ALS is just one disease of many known as motor neuron diseases.  The motor neuron diseases are categorized as an orphan disease, which means they are rare. This is why many of the big pharmaceutical companies do not invest or take part in the necessary research for finding a cure.  These diseases are hugely complex and why the ice bucket challenge and contributions are so crucial. I have been around athletes at all levels for over 25 years and I have seen them complete incredible acts of strength but it pales in comparison to the strength of a human being with ALS.

For those who did not take part in the ice bucket challenge and have not made their contribution yet, each organization listed below is reputable and can be trusted: 

Project ALS {www.projectals.org}

ALSTDI {www.als.net}

Iowa Chapter of ALSA {www.webia.alsa.org} 

Next month, her cousin Kady and I will be walking in Des Moines at the annual Iowa ALS Walk.  Anyone who was not able to participate in the ice bucket challenge or would like to make a contribution, you can donate to our team, “Alex’s Army” at:


So thank you Steffi for putting things in perspective and reminding everyone that actions DO speak louder than words.


Director, Athletic Training Education

Professor, Dept. of Sports Science & Health Education