Father’s ALS diagnosis inspires student’s advocacy

by Jennifer Johnson,

  • Student whose father was diagnosed with ALS poses with Oregon ALS Association members in Washington, D.C. Student lobbied there on behalf of the ALS chapter in Portland, where she spent the summer as an intern.
    Leah Olson ’20 spent last summer interning in Portland for the ALS Association, which gave her a chance to lobby for bills in Washington, D.C. She's standing here (far right) with her Oregon-based team — and someone living with ALS — at the national association’s annual advocacy conference in D.C. People who were affected by or living with the disease met with members of Congress to advocate for policy-related issues.

Leah Olson ’20 interns with ALS Association, lobbies at D.C. and in Salem.

The race began for Leah Olson ’20 in early February. 

Per tradition, she and her brothers convened at home in West Linn, Oregon for their father’s birthday weekend. Then they heard the news: their dad Marc, 59, was diagnosed with ALS, a fatal neuromuscular degenerative disease. 

Olson immediately shifted into action. After applying to Willamette’s Career Development Internship Fund, which are given to promote career preparedness, Olson gained enough financial support to intern with a Portland-based ALS Association chapter and lobby for ALS-related bills in Washington, D.C., this past summer. Olson is a politics major.

In Salem, she and her family provided emotional testimony at the capitol on behalf of paid family and medical leave, propelling the state to pass one of the most generous proposals in the nation. 

“I’m very much like my mother,” she said. “When something in the world needs to be better, we dive in.” 

From now until October, she’s working on yet another big project — Marc’s Marathon, a fundraiser for the ALS Association that she will represent at the Portland Marathon. All donations to her fundraiser will support the advancements in science and technology that ultimately aim to cure the disease, she said. 

Olson had long dreamed of running her first marathon with her dad, who has run 35. She said, “Although that won’t be fulfilled, I can still walk across the finish line next to him.” 

Making a difference in D.C. and in Salem

Like many Willamette students, Olson wants to change people’s lives through policy and education. 

She’s interned for Ben Cannon, the executive director of the Oregon Higher Education Coordinating Commission, and Lindsey Capps, chief education officer and advisor to Gov. Kate Brown. During high school, she led the first-ever nonprofit that focuses on bringing Oregon student voices to education policy discussions

By the time she arrived in D.C., she was well-prepared. She spent the week running from building to building to hold policy discussions with Congress on several ALS-related bills, such as one that would waive the five-month waiting period for Social Security Disability Insurance benefits. 

Knowledge she gleaned from these congressional meetings informed her internship advocacy work in Portland and also at home, where most of her family appeared to offer testimony before the House Business and Labor Committee and Senate Workforce Committee at the state Capitol. 

They testified on the positive impact California’s paid family medical leave had on their ability to help their father fight ALS. Three days after his diagnosis, Olson’s brother, an engineer with The Spaceship Company in California, took three months’ leave from work to serve as their father’s full time medical researcher and hand-craft a treatment plan for him. 

“California’s law gave our family the support we needed to aggressively fight ALS,” Olson said, “So we wanted to raise our voices to afford the same right to Oregon families.” 

Prioritizing family 

When Olson wasn’t visiting the ALS office in Portland, training families to advocate on behalf of ALS issues or working on her fundraiser, she ran home to be with her family. 

Her father has been staying positive and pursuing every possible avenue he can, from acupuncture to mindfulness. He’s also among 200 people worldwide who are participating in an encouraging stem cell clinical trial through the University of California in Irvine. The study mixes his stem cells with a drug to stop progression of the disease. 

This promising development has provided a sense of hope for their family, and their push for progress extends beyond Olson’s father. In October, Olson says she’s running “not only to raise money to help my dad, but all others impacted by this terrible disease.” 

Learn more about internship funds

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