In the last year, nearly 450 volunteers lent a helping hand to our Chapter in some way, shape or form. Some gave a few hours of their time, some dozens upon dozens of hours. Some came to us after having had a family member or friend served by our Chapter in the past; others came to us simply out of a desire to make a difference. These volunteers are young and old, from all over our region, and from all sorts of different backgrounds. Each is unique, and each has a story.
April is National Volunteer Month—a month when we recognize the contributions volunteers make when donating their time, talents, and energy to worthy causes. The ALS Association St. Louis Regional Chapter depends on the efforts of our volunteers to help support our many programs, and we are incredibly grateful for all that our volunteers do for our ALS community.
In honor of National Volunteer Month, we are sharing the stories of three chapter volunteers to shine a spotlight on their contributions in the fight against ALS.
There was a time when all Tina knew about ALS was of Major League Baseball player Lou Gehrig. But that changed when her younger sister Kathy was diagnosed with ALS in 2014. Kathy’s ALS symptoms progressed quickly in the beginning. By the time she received her official diagnosis a year after first displaying symptoms, she already required a walker to get around, and within months she transitioned to a wheelchair. She passed away in 2018 at the age of 50.
Because Kathy lived in St. Louis, Tina and her family participated in the St. Louis Walk to Defeat ALS in 2015, but her sister was unable to join, as her breathing issues had become too severe. After that, Kathy and her family began participating in the Springfield Walk to Defeat ALS, and since 2017, Tina has been a member of the Springfield Walk Committee.
“It’s nice to be able to keep my sister’s memory in focus by being on the committee,” says Tina. “I honor her memory by helping others.”
Before attending her first walk, Tina felt her family was struggling alone, but the kindness and support they were shown that day and at each walk since has made her feel very differently. “Seeing other people fighting with you and supporting you makes you realize you’re not alone,” she says.
As a Springfield Walk Committee member, Tina now plays a part in welcoming others into the community that made all the difference for her. “People I don’t even know have talked to me about their loved ones. We have a common understanding—and a common goal. Whether you’re going through it or you have been through it, it’s important to know you’re not alone.”
Timothy Hogenkamp Jr.
Timmy first became involved with the St. Louis Regional Chapter when he participated in the St. Louis Walk to Defeat ALS in 2019 in memory of his best friend’s father. After that, he reached out about additional volunteer opportunities and donated his time to several events, including the Kimmswick 5K and the Ice Bucket Bash, before becoming a part of the chapter’s Patient Volunteer Program, which matches volunteers with a family affected by ALS for visits at regular, mutually agreed upon times, to help with tasks that otherwise become huge obstacles for the family. This program is currently on hold during the COVID-19 pandemic.
In Timmy’s case, he was matched with a man in his early 50s named Michael, and the two became good friends before Michael passed away in February. Despite Michael being more than 20 years his senior, Timmy found a kindred spirit in his new friend, who he described as a huge outdoorsman, world traveler, and deep critical thinker.
“We were so similar in our mindsets as well as our thinking,” Timmy says. “It was really beautiful that the ALS chapter was able to connect us because with our age difference and his disability setting in, the chances for us to have met otherwise would have been very slim.”
One of Timmy’s favorite memories with Michael was when the two of them went to Sherman Beach, a spot off the Meramec River, tucked back on an old road. They talked about everything from rock structures to Timmy’s girl troubles, from their mutual love of the outdoors to the political system and their family relationships. With Michael, Timmy had conversations he couldn’t have with just anybody. To this day, he is grateful for the ways their friendship allowed him to be more vulnerable.
“His celebration of life was really special. It was exactly how I want to be remembered,” says Timmy, reflecting on the gathering held for Michael’s friends and family after his passing.
Timmy’s resolve to help fight ALS in any way he can has only strengthened since Michael’s passing. “Michael being gone just drives me more to help fight this disease. It motivates the hell out of me to fix this. It’s just unfair. It’s unacceptable.”
As an office support volunteer, Carole has been helping with data entry since January, even insisting that she be given tasks to work on from home during the COVID-19 “Stay at Home” order. In the past, she has also volunteered for the Hot Cider Hustler, the Ice Bucket Bash, and the Kimmswick 5K.
“Carole is a life saver!” says Natalie Pottebaum, Development Manager for the St. Louis Regional Chapter.
Carole volunteers in memory of her late husband Frank, a retired engineer, who was first diagnosed with ALS in February 2015, after over a year of increasingly severe and baffling symptoms. “Once we had the diagnosis, I found the local chapter online and filled out an application,” Carole says, “Within 45 minutes, I got a call to set up an appointment.” A member of the Care Service team was at their home the following week. “From that point on, I was sold. That was my lifeline. Someone was there for me to turn to for answers and resources.”
Carole is grateful to the St. Louis Regional Chapter for providing “practical answers to real life problems” and helping the family acquire things such as equipment, supplements, and respite care.
Unfortunately, Frank’s battle with ALS ended in November 2016 at age 61. Volunteering with the ALS Association now gives Carole a newfound focus and sense of regularity. “It’s something else to focus on and gives me a good sense of giving back.”
Because Carole is retired and able to offer her data entry skills as an office volunteer, this saves money for the St. Louis Regional Chapter, as there had previously been talks of hiring additional staff to assist with data entry. “I want the work to get done. If my time can help that, some family will then be able to get more resources,” she says. “I know what it means in real time to not pay another salary.”
“I feel that the ALS St. Louis Chapter is a lifeline to patients and their families,” says Carole. “Their support is vital in this area, and I am proud and happy to support them not just with money, but with my time.”
These three special people represent only a small fraction of the many incredible volunteers the St. Louis Regional Chapter is fortunate enough to work with, each with a story of their own. The impact of our volunteers is felt deeply by both our staff and the families we serve. If you are interested in future volunteer opportunities, please visit here.