Before the holiday break was in full swing, I had the opportunity to give a virtual ALS in-service to a 10th-grade class at Liberty Preparatory Christian Academy. Kelly Lemmon, an English teacher, reached out to share that her class had been reading the empowering memoir I’ll Push You. This wonderful read is about friendship and determination. It tells the story of two lifelong friends, Justin Skeesuck and Patrick Gray, who set out on the challenging 500-mile Camino de Santiago pilgrimage in Spain. Despite Justin’s physical limitations due to MAMA (Multifocal Acquired Motor Axonopathy), Patrick pushes him in a customized wheelchair, showcasing their bond and the strength of the human spirit.
Originally, it was thought that Justin had ALS. With further clinic appointments, Justin was diagnosed MAMA. Kelly asked if I could explain the difference between MAMA and ALS, two acronyms that fall under the broad Motor Neuron Disease umbrella. Without hesitation, I prepared a PowerPoint presentation to raise awareness about both ALS and MAMA to a class of 10th graders. My goal was to break down the differences in a way that was relatable and engaging for a sophomore audience.
To illustrate how rare these diseases are, I used a visual aid featuring an image of Michigan Stadium, which can hold over 100,000 fans (though I confess, as a Hoosier fan, I had mixed feelings about using this example!). I showed the packed stadium and explained:
“Imagine this entire stadium filled with fans cheering for their team. Now, let’s focus on just two people in the crowd. Little do those around them know, these two individuals have ALS.”
The students reacted with eyes wide open. I continued:
“Now, let’s consider MAMA. Out of this entire stadium, only one person would have MAMA.”
Their shocked expressions told me the message was sinking in.
To keep the session interactive (and to wake everyone up at 8:40 a.m.), I introduced an activity. I asked the students to stand up, shake hands with the person next to them, and introduce themselves. Some students even gave hugs! Then, I asked them to sit back down, pick up an object from their desks, raise it in the air, and then put it down.
Curious about the purpose, the students watched as I explained:
“While these simple actions may feel automatic to us, for someone with ALS or MAMA, these movements could be impossible. Imagine not being able to hold your pet, drink your favorite beverage, or say ‘I love you’ to someone you care about. With ALS, the brain’s messages cannot reach the rest of the body, causing muscles to weaken and ultimately stop functioning.”
As the presentation wrapped up, the students asked thoughtful questions:
- “Can kids get ALS?”
- “Are people born with ALS?”
- “What do patients ask for when they’re in pain or approaching end-of-life care?”
- “What’s the most inspiring story you’ve heard from a patient?”
- “How do you stay positive while working with such a challenging disease?”
I answered their questions honestly. I explained that while ALS in children is extremely rare, it does exist and is called Juvenile ALS, which is typically linked to genetic mutations. The odds of a child being diagnosed are about 1 in a million worldwide. I also emphasized the importance of genetic counseling and knowing family medical history.
For end-of-life care, I highlighted the value of hospice and palliative care for managing pain and ensuring dignity. I also discussed the personal autonomy patients have in deciding how they wish to approach their journey with this disease.
When asked for an inspiring story, I shared the incredible journey of Andrea Peet, an ALS patient and advocate who founded the Team Drea Foundation. Despite her diagnosis, Andrea has completed marathons and triathlons, embodying resilience and grit. Her foundation raises awareness and funds research to find a cure for ALS. I encouraged the class to watch her documentary, Go On, Be Brave.
Finally, I addressed how I stay positive while working with a disease like ALS. I told them:
“I’m a kooky, weird person, and I get to meet other kooky, weird people in their own unique ways. With a disease like ALS, you must be honest and share raw truths most of the time. But if you do that, you also must balance it out with something good, because life teaches us that there’s always a balance between good and bad. I’m the kind of person who looks for the silver lining, and sometimes people just need help finding it. That’s where I come in. Sometimes, people may not feel ready to look for the silver lining, and that’s okay, I’ll be there with them, every step of the way. It takes a village, and I’m that kooky resource person who sticks around in the background, offering resources that they can tap into when they’re ready.”
I also highlighted the incredible work of ALS clinics and how inspiring it is to be surrounded by a wealth of knowledge held by Neurologists and other disciplines. They are the ones that help make things make a little more sense. Additionally, I emphasized the importance of ALS and Motor Neuron Disease organizations, which are dedicated to raising awareness and offering support in countless ways.
This experience is a constant reminder on how rewarding it is to engage young minds and inspire empathy and awareness for those affected by ALS and related diseases. Having the chance to be a resource to all ages is essential to our ALS United North Carolina values.
I wanted to share the kind words that Kelly Lemmon sent to me. Her words not only filled my cup but emphasized the importance of talking about ALS and brining awareness to the disease.
“Thank You for the Zoom Call, Lily, I wanted to sincerely thank you for taking the time to meet with my sophomores and me on Zoom. We greatly appreciate your willingness to share insights about ALS and provide valuable information. Your knowledge and kindness made the conversation both informative and meaningful. Please know how much we value your support and the time you dedicated to helping us better understand this important topic. My students were very engaged and inquisitive. They loved being able to put a perspective on their reading. Thank you again very much.”
To finish, I want to thank YOU Mrs. Lemmon for raising awareness and having your students read a wonderful, empowering book. You never know what will spark the next big change or even a cure with these young minds! Please know that I’m more than happy to do an in-service for your schools, organizations, business, etc. so that awareness can be understood at any age.
-Lily Cola, MSW