At 8 a.m. on a Wednesday, the HUB-Robeson Center was nearly empty, save for several early-risers in the Starbucks line. The sleepy dynamic shifted, however, when a curly-haired girl strode through the area with a smile on her face, unaffected by the early hour or the tired, shuffling students around her.
A bubbly, self-described morning person, Mackenzie Anderson wears no outward sign of the hand she’s been dealt in life.
At age 17, Anderson was told that her mother had been diagnosed with Amyotrophic Lateral Sclerosis or ALS, a rare and fatal neuromuscular disease. The average life span after an ALS diagnosis is two to five years, according to the ALS Association.
“My parents had gone to the hospital, and they came home and sat me and my brother down on the couch,” says Anderson, recalling the day. “It’s funny because this couch had always been known as the ‘bad news’ couch. I knew something was wrong.”
As her mother’s symptoms began with limited movement in her fingers, Anderson and her father had already researched potential diagnoses.
“When they came back and said ‘this is ALS; there’s no cure,’ I think that’s when it hit me. Like, holy crap. My mom is going to die,” says Anderson.
Anderson describes the stages of grief she experienced following her mother’s diagnosis, beginning with denial. Once she heard the ALS lifespan prognosis, her mindset changed from despair to determination.
“Obviously, I’m not a scientist — I can’t develop a cure. But I was like, what can I do?” she thought.
As it turns out, the answer to her question was: plenty. Her mother was diagnosed the August before Anderson’s senior year of high school. Anderson, now a sophomore at Penn State, has since raised over $60,000 for the ALS Association.
“I reached out to the ALS Association Massachusetts Chapter and started fundraising for their walk in Boston. And that’s how it all kicked off,” Anderson says.
In two years, Anderson raised that $60,000 through the Walk to Defeat ALS, along with another $20,000 through Hope Loves Company, a nonprofit providing support for children affected by ALS.
“It definitely kick-started something in me to do everything I can to help this cause,” she says.
Anderson’s experience with Hope Loves Company, which eventually reached the point of obtaining a chairwoman position, began on a personal note.
“I knew I needed something … some form of therapy or help. I was just in a really dark place,” she says.
Her Google search yielded the name of a nonprofit that had begun only two years prior, for children ages 6 to 21 who have a parent diagnosed with ALS. Anderson attended a camp that the nonprofit operates. After her first experience there, she was “hooked.”
“I always say it’s just like a weekend to be a kid again,” says Anderson, in regards to the camp. “When you’re at home, you’re constantly just caregiving for your parent or grandparent, and you just need a break. When you’re there, they just remind you that this disease forces you to grow up faster than anyone should.”
While ALS gave Anderson what she calls the worst two years of her life, she also describes the disease as having given her an opportunity to discover her passion and her people.
“Those kids are my lifeline,” says Anderson. “We still Snapchat in a group daily, we still talk all the time. It’s really cool, especially for such a rare illness, to have a group of people who really understand what you’re going through.”
She was so influenced by the nonprofit, in fact, that she took matters into her own hands to bring the camp closer to home. After drafting a proposal to open a camp in Massachusetts, Anderson fundraised to make her dream a reality.
What this led to, however, was even bigger. Her involvement in fundraising for ALS research and her work alongside Hope Loves Company brought her to a conference for worldwide ALS organizations, the International ALS Alliance Meeting.
“Of all the organizations in the whole world, HLC was the only one to offer anything for kids,” Anderson says.
She spoke at the conference, and after sharing her story, was overwhelmed by the support and interest from all corners of the world.
“Different countries like Argentina [and Iceland] came up to [Jodi O’Donnell-Ames, founder of HLC], and they were like, ‘How can we help? How can we implement this into our countries, because this is so important.’”
Following several more speaking engagements and appearances at sporting events with HLC, Anderson began work as an intern this previous summer. Through this internship position, she participated in an exchange with the group from Iceland, traveling with other HLC young ambassadors and presenting to one-third of Iceland’s ALS patients. The young ambassadors discussed the potential for resources for children affected by ALS and met some of these children, who are now planning to attend Camp HLC this summer.
O’Donnell-Ames and the HLC staff knew that Anderson needed a more long-term position in the organization. Now equipped with the title of chairwoman, Anderson is involved in speaking engagements, fundraisers, and the organization’s newsletter.
Throughout the building of her impressive résumé and inspiring mindset at the age of 20, Anderson emphasizes the importance of focusing not on the pain, but on the purpose she has found within that pain — a practice that can be applied to any type of pain.
“Any bad situation, you just need to focus on what you can do to get through that point. I think that’s what really helped me, especially when you feel so helpless. What can you do to feel better about that situation, and then do that thing. It’s not always going to be something that will revolutionize what’s going on or make it completely better, but it’ll help you cope in a way that makes you feel like you’re taking some action. That’s definitely the mantra that I now live by.”