At the end of this month, Dave Van de Riet will complete his term as chair of The ALS Association St. Louis Regional Chapter’s Board of Directors. Over the past six and a half years, Dave’s leadership has been characterized by innovative ideas, strategic thinking and an overwhelming commitment to providing quality care to families facing an ALS diagnosis. His energy and passion for the mission will be difficult to match, but he leaves us a better organization and on strong footing for the future.
Dave will continue to serve people with ALS and their families locally in his role as the St. Louis Walk to Defeat ALS® Chair; as a member of the fund development, finance and executive committees; and in a national capacity as vice chair of The ALS Association’s Governance Committee and member of the Board of Representatives.
Thank you Dave, for your extraordinary leadership and tireless dedication to our mission and the people we serve.
In this post, Dave reflects on his tenure as Board Chair.
Back in July of 2012, I was honored to become the board chairman of the ALS Association St. Louis Regional Chapter. I had no idea what kind of journey it would be. Certainly, I had some idea of the responsibilities, the meetings and the commitment. I had the pleasure of serving as Vice Chair while watching past Chair Rick Palank ably lead the Board and along with our President/CEO – Maureen Barber Hill – establish a very strong foundation for the stability and success of the Chapter. What I didn’t know, however, was how much the job could change me.
Beginning in 2013, I made my first trip to Washington DC for ALS Advocacy on Capitol Hill. It was an amazing experience to see so many pALS and their families and ALS Chapter staff from around the country together to talk to members of Congress about the needs of those suffering from this disease. I was assigned to be with a man from our Chapter who was suffering from ALS (“Paul”) and his wife (“Kathy”), a longtime volunteer – Diana Wunning and my oldest son Sean who was 15 at the time. Throughout that day, we watched as “Paul” and “Kathy” shared their story and asked for help that most likely wouldn’t be for them – it would be for other pALS and their families – many who hadn’t even been diagnosed yet. On that day, “Paul” and “Kathy” elected to go to Washington DC to advocate for assistance for others on what was their 35th anniversary of their first date together. In ensuing years, I have been fortunate to make that same trip four other times and each time, I was honored to meet incredibly selfless people who are doing whatever they can to make life better for those who are suffering. This past year, one of our pALS ,“Steve”, chose to make another trip to Washington to tell his story and advocate for others. In so doing, he missed his son’s kindergarten graduation.
In 2014, we saw the incredible Ice Bucket Challenge that is still transforming the fight to find a treatment and a cure for ALS. Since the summer of 2014, five new ALS genes have been discovered and with each new discovery, researchers have additional therapeutic targets. “The more ALS therapeutic targets are identified, the more likely a treatment will be found” (ALS Association). Also, awareness of the disease has markedly increased since the Ice Bucket Challenge – a very important development as well! This disease is now on the public’s radar after decades of people not knowing what ALS is.
Our Chapter’s “Walk to Defeat ALS®” program continues to grow with annual Walks in Springfield, IL and St. Louis. (This year’s Springfield Walk is Saturday, June 15th and the St. Louis Walk is Saturday June 22nd.) These Walks are such amazing events with thousands of people gathered together to raise awareness and funds to fight ALS. From humble beginnings, the Walks have grown and it is a vivid example of the dedication of the larger ALS Family. Seeing so many people walking in honor of or in memory of someone they love is an inspiring thing to witness. If you haven’t been a part of the Walk, please think about doing so in 2019!
The Walks aren’t the only ways people can help. Through the years, the Chapter has grown the ways to get involved and there are more options today than ever before. From an event standpoint, we have our 5Kimmswick Keep Your Eyes on the Pies race, the Swing for a Cure Golf Tournament, the annual Ice Bucket Bash and many Community Partner Events (which are listed on the Chapter website). In addition, there are volunteer opportunities to help run the events, work in the Chapter office or even to help out in the homes of pALS with the Patient Volunteer Program.
In my role as board chair, I’ve been so blessed with the many pALS and families I have been privileged to meet. pALS who have invited me to visit with them in their homes or during trips to our ALS clinics have been a gift to me. Seeing their courage and strength in the face of the battle they are waging is almost indescribable. To receive texts from pALS like “Dave” to tell me to have a good week or to pass along a funny story is something I’ll always cherish.
As I look back over the pALS I have gotten to know, it is remarkable to me how ALS doesn’t define them. I’ve heard one say “I have ALS – ALS does NOT have me”. Whether it be a pALS who continues to conduct research for the books he is still writing (yes, I said books – plural!), a pALS who still goes to each and every baseball or hockey game his son plays, or the pALS who just spent weeks in Australia, or the pALS in Missouri & Illinois that host their own fundraisers for their Walk teams; they are living their lives to the fullest extent they can. And, what a gift that is to all of us because our lives are richer for their contributions and their determination to live their own lives.
Recently, I was on a clinic visit at the VA Medical Center and a nice couple permitted me to follow along with them as they visited their various medical professionals. The husband – who is suffering from ALS – was asked if he needed anything. I’ll never forget his answer. He smiled sweetly and said “I have my wife and my family, I have everything I need”.
This is the strength and the courage I mention. And for so many, it is the reason to stay involved in this fight against ALS. If the pALS don’t quit, we shouldn’t either in our efforts to help where we can, to make a difference where we can. I am more optimistic than ever before that the ALS researchers which you support are closing in on meaningful treatments and eventually a cure.
“If the pALS don’t quit, we shouldn’t either in our efforts to help where we can, to make a difference where we can.”
As my time as board chair comes to an end, I look forward to continuing on the board and seeing many of you at our upcoming events. I want to thank all of the members of the board, our President/CEO Maureen Barber Hill and ALS Chapter staff – past and present – for their dedication and commitment to serve those who are suffering. I am humbled by your commitment. I also want to thank all of the pALS and their families who inspire us all to be “in it for life”! And to I want to thank my own family for supporting me in this job as well.
Our current Vice Chair – Josh Rogers – becomes the new Board Chair on February 1st. Josh is a very dedicated member of the Board and he will do a great job as we all work to serve those in need!
The Chapter is always looking for dedicated individuals to join our Board and make a difference in the lives of people with ALS. If you’re interested in joining, please contact Mhill@alsastl.org or 314.432.7257.