By Dave Van de Riet
As summertime is upon us, communities all over the country will begin to host the Walk to Defeat ALS. This annual event brings together thousands of people nationwide to walk in honor of or in memory of someone they love. But that doesn’t tell the full story as to what this Walk means.
About 15 years ago, I had the pleasure to meet a lady who was attending the Walk by herself. She explained that her husband had just been diagnosed with ALS and she happened to hear about the Walk on the radio. Other than her husband, she had no family in town and understandably she was very worried about what was to come. But as we walked, she talked about being overwhelmed by the sight of the crowd there that day. She said for the first time since her husband’s diagnosis, she felt that she wasn’t completely alone.
There are so many inspiring stories that are part of each and every Walk. Seeing the hundreds of teams – most proudly wearing colorful shirts adorned with pictures or designs that say why they are there – is always memorable. You can hear the stories sometimes punctuated by laughter, sometimes by hugs and tears. But they are always passionate and meaningful and remind you that we are all in this together. For a disease that can be so isolating, how powerful is that?
Last year, I happened to attend our ALS clinic and was visiting with a husband and wife. The husband had been fighting ALS for some time. But before their appointment began, they wanted to make sure they turned in money that they had raised for the Walk. In the midst of their battle, they were still trying to make a difference – still trying to help others all through the Walk. This is part of the spirit that continually makes the Walk more than just a fundraiser.
The Walks have many teams who are walking in memory of their loved ones. And, sometimes their loved one lost his or her battle long ago. But to these teams, that’s not the issue. The issue remains that people are still suffering. So, these teams gather their families and friends each and every year and strongly say they need to stay in the fight against this disease and stay in it until there is a cure.
Several years back, I was talking with a man who lost his Mom to ALS over 20 years ago. He was telling me about her and how he drifted away from the cause in the intervening years. But he had decided that to honor her, he wanted to join the Walk in Springfield, IL because he had seen some news reports about the event and was inspired to reengage.
As he wiped a tear from his eye, he said he wished he had never left the cause. We told him that all that matters is that he is here now!
The Walk wouldn’t happen without all of the hard work and planning from the ALS Chapter staff and a dedicated group of volunteers. These two groups of people know firsthand how special this event is; how important this event is. For many chapters, the Walks are the single biggest fundraiser and potentially the one time during the course of the year where thousands of people are coming together for this cause. One year at the conclusion of the event, I asked a committee member if he were planning on returning the next year to work on the Walk. He stopped what he was doing, looked at me and said something that was simple but meaningful at the same time. His words were “I’m in it for life”. How eloquent and inspiring his words were and are! They have become the unofficial motto of the Walk staff, committee and the volunteers who are there long before the Walk begins and stay long after it ends. “In it for life!”
So many people are part of the Walk – each with his or her own story or their own reason for being there. Those reasons push them to walk for those who can’t. But there are also many people who can’t be there the day of the Walk but still participate by being a “virtual walker”. These “virtual walkers” register to participate, raise funds, encourage the participation of others and provide a vital role in the success of these events. Recently, there was a couple who was unable to be at the Walk but they still wanted to participate. They were actually in China on Walk day but they had proudly brought their team shirts with them and made sure to wear them while the event was going on at home. It may have been the first time there has ever been Walk to Defeat ALS virtual walkers at the Great Wall of China – another example of the dedication that so many have!
Recently, the Chapter hosted its annual Walk Kick-Off party. This event is meant to start the Walk season and energize new walkers and veteran walkers and share ideas to raise awareness and funds and make the Walk the best it can possibly be. We are always fortunate to have some PALS in attendance. Their presence is always inspiring as they are dealing with so much. Yet, they show up because they too are energized and looking for ways to make their teams and the Walk a success. How can you not step up your own game when you see such passion?
The night of the Kick-Off, I received a message from a wonderful lady who has ALS. She wanted to let me know why she couldn’t be there as she was having a medical procedure. But, she assured me, she would be at the Walk because of how important it is. I’m not sure she understands how much she inspires those around her and is further evidence that ALS will never define her and so many others.
So, as we approach Walk season this year, think of the differences this event can make – the differences YOU can make by joining with those locally and with those across the country. If you are a veteran participant, we say “thank you”. If you are new to the Walk this year, we say “Welcome”! Prepare to be inspired by what you witness and what you feel. The Walk is such a special and wonderful event and together we will strike out ALS.
The Springfield, IL Walk to Defeat ALS is June 10th at Southwind Park, and the St. Louis Walk will be held on June 24th at Forest Park. Register today at www.WalktoDefeatALS.org.
Dave Van de Riet joined the ALS Association St. Louis Regional Chapter’s Board of Directors in 2006 and became St. Louis Walk Chair the same year. Since 2012, Dave has also served as the Board Chair of the St. Louis Chapter. Dave’s Dad, Ray Van de Riet Sr, was diagnosed with ALS in 1995 and passed away in July 2000. The entire Van de Riet Family formed their Walk team – The Globemasters – in 2001 and continue to participate each year in the St. Louis Walk to Defeat ALS.