Imagine being affected by a neurological disease from a young age – a disease that causes a loss of vision, deafness, learning disabilities, and more symptoms that impact your life. A disease so dangerous that, without early diagnosis and treatment, it results in death. This is the reality of the young boys who are affected by the rare, progressive disease that is adrenoleukodystrophy (ALD). And the worst part, treatment and recovery is not impossible. In fact, getting a bone marrow match and transplant is what dictates life and death for these boys. 

“A lot of the boys who get diagnosed with ALD can be cured by getting successful bone marrow transplants,” Mrs. Jennifer Strathman, the PBS (Principles of Biomedical Science) and HBS (Human Body Systems) teacher at Liberty, and a previous participant of the Run for ALD, explained. “So, that is the only current treatment, and that halts the progression of cerebral ALD.”

Knockout ALD is a nonprofit organization that works towards building awareness of and funds for ALD research. One of their steps to help the boys who are affected by ALD is their annual Run for ALD, a locally created 5K/1 mile run/walk that raises money and awareness for ALD. It is the only event of its kind in the St. Louis area, in which the community gets together to pave the way for ALD to be knocked out.

“All of the money that’s raised from the ALD race goes to the University of Minnesota’s Leukodystrophy Center for ALD research, which helps learn how to detect the disease earlier,” Strathman explains. “They also help with researching therapy and treatment options.”

Strathman has been participating in this special event since last year. This year, she continues to run for this monumental cause by signing up to run the 5K.

Amelia Huebbe, a senior, talks about why she feels Strathman runs for causes like the Run for ALD.

“I know Mrs. Strathman used to run cross country back when she was in high school,” Huebbe said. “I know that running is something she loves, and, even as teacher, she’s always trying to find ways to make a difference.

Strathman’s efforts, along with the efforts of many others in the St. Louis region, are a fundamental part of the success of Knockout ALD’s event. With the people pitching in, and the partnerships that support this race, money is being raised to give the boys affected by ALD a fighting chance.

“In addition to working with the University of Minnesota’s Leukodystrophy Center for ALD research, Be the Match is also a strong partner for the race because they’re trying to get people on the registry to be bone marrow transplant donors so that they can get more boys those treatment options,” Strathman said.

Strathman’s decision to participate in the race has been made due to many different factors.

“Be the Match is HOSA’s national service project, so I already was trying to do things to help out Be the Match, but then my friend actually told me about the race,” Strahman said. “She has a son that goes to Saint Louis University High School, and he’s a cross country runner, and one of the boys who’s on the cross country team was diagnosed with ALD. Luckily, he was able to find a bone marrow transplant match, and he went through the process, had a bone marrow transplant that was successful, and he’s going strong to this day. So, every year the SLUH cross country team and all of the parents get together to run this race, and, of course, they try to encourage others to join them. That’s how I got involved, and I think that it’s a great cause, so I’m going to keep on doing it as long as I can.”  

This event helps so many families, and brings awareness to a very devastating disease. Strathman also talks about what this race means to her.

“I just see this race as that: an opportunity for me to try to make a positive difference in the world, to try to help advance research, and hopefully get some treatment options so that if I’m ever affected by diseases–or my daughters, grandkids, family, friends, students, and their kids one day–one of these races I run make a difference to help get them treatment and cures,” Strathman said.

This year’s Run for ALD will be happening on Saturday, Nov. 19 at 9 a.m. at Creve Coeur Park in Maryland Heights. By participating, everyone comes one step closer to a world where ALD is known, no one suffers because of ALD, and everyone gains a functional cure.

Huebbe explains why she thinks it’s important for people like Mrs. Strathman to come together and participate to help others in the community.

“The way that I see it is that if I was a guy who has ALD, I would want someone to help me out in the way that I couldn’t,” Huebbe said.

Strathman describes how she feels when she does fundraising events like the Run for ALD.

“The whole time I’m running, biking, or doing whatever, I’m always thinking about the patients who are being bound to hospital beds because of their disease.” Strathman expressed, “I just take that time during the event to really think about how blessed I am to be healthy. So, I just think about all of those people, and run on their behalf because I know that they’d love to be out there if they could.”

ALD is a fatal disease that must be stopped because the people affected by this, and any other illness deserve the chance to be free from what binds them down and keeps them from what they could do if they had the treatment they need. Together, organizations like Knockout ALD and people in the community like Strathman work hard and progressively move towards the day that ALD is taken out.

However, the research needed to find better treatments and cures for diseases like ALD is not cheap, and many research clinics and facilities depend on fundraising and grants to keep going. Strathman talks about why people participating in fundraisers like the Run for ALD is so important for the patients and hardworking researchers. 

“Well, first, they’ll have the money needed to keep going with their research, and they’ll have peace of mind from knowing that they’ll not be cut off in the middle of their research. I think it’s also good for them to have support,” Strathman said. “I’ve never been in research, but I can imagine that it can get frustrating at times when you so desperately want to find new treatment or cure and it takes a long time. So, just to see that the community supports them and wants them to keep going will hopefully give them that morale boost that they need on those tough days.”  

So far, 532 participants have signed up to participate in this huge fundraising event, and $15,275.38 has been donated to this cause as well, a monumental amount that will surely help people who suffer from ALD now as well as in the future, and it will help more awareness be brought to this disease itself. 

“I think that this event is great because I didn’t know about ALD prior to this run last year, if I’m being honest, and it’s really unfortunate that if it is diagnosed early then that boy can be put on a list for a bone marrow transplant sooner, and will have a greater chance of getting a match. And so, just by raising awareness, hopefully that’s going to get this diagnosed earlier, and earlier.” Strathman explained, “There can be more matches made and more boys saved.”   

Huebbe mentions the type of person that Strathman is in her eyes.

“Mrs. Strathman is the kindest teacher I have ever met. No matter how many mistakes you’ve made, she will always look on the bright side of that, and she will help you overcome that stuff,” Huebbe said. “She’s an amazing teacher, and the kindest person I have ever met.”

 You can also be a part of what helps the patients affected by diseases like ALD get the treatment they need by signing up to participate in fundraisers like the Run for ALD or by learning more about important medical causes and organizations like Be the Match, where you can become a bone marrow donor today. After all, the people affected by diseases deserve the chance to successfully get treated, recover, and come back stronger than ever.