Alumni in Action: Alison Avery ’16 finds her passion in fundraising and advocating for others with Friedreich’s Ataxia

Diagnosed with Friedreich's Ataxia, a rare degenerative disease, Avery serves as an ambassador for others with the illness while also pursuing her passions through nonprofit work with the NFL Foundation. 

Alison Avery '16Alison Avery ’16 knew Elon was the perfect fit from the first time she visited campus. Her dream of attending became reality after she received an Elon Engagement Scholarship, which is funded by donors who make gifts of every size to Elon’s annual funds.

“This scholarship made me feel like Elon really valued who I was, and that they wanted to help me accomplish my dreams,” said Avery.

As a student, she majored in human service studies with a minor in business administration, psychology and early childhood education. She got involved on campus as a member of Kappa Delta sorority, Alpha Phi Omega service fraternity and the university’s Disability Advisory Committee.

Along the way, she contended with a diagnosis of Friedreich’s Ataxia, a rare and progressive neuro-muscular disorder. Avery’s sister had also been diagnosed with the inherited degenerative disorder, which affects just 15,000 people worldwide. During her time at Elon, Avery went from walking freely to using a walker, and eventually became a full-time wheelchair user.

Having been diagnosed with Friedreich’s Ataxia, a rare degenerative disease, at a young age, Avery said it could have been easy for her to be pessimistic about her diagnosis. But a quote from Confucius — “Our greatest glory is not in never falling, but in rising every time we fall — has become a motto for her own life, reminding her of all she has to be thankful for.

“When my diagnosis gets me down, it’s easy to go down the tunnel of ‘Why me? What did I do to deserve this?’ But it’s so important not to. I have to remind myself that I am so blessed to be surrounded by family and friends that support me and that there is much more going on in my life than Friedreich’s Ataxia.”

Despite dealing with the hardship of the disease, Avery has become an advocate for herself and for others. That advocacy extends to Elon, where she designates her donations to disability resources to provide support for other students with disabilities.

Avery'16 accepts her diploma from President Lambert.
Avery ’16 accepts her diploma from President Lambert.

“Elon taught me how to speak up for myself and others. Dealing with the changes of a progressive condition is not a typical experience for a college student. I learned how to ask for accommodations that I needed, and I refused to let my disability hold me back,” said Avery.

Avery '16 with Drew Brees, former quarterback for the Saints and the Chargers, and sports analyst for NBC
Avery ’16 with Drew Brees, former quarterback for the Saints and the Chargers, and sports analyst for NBC

Through her own advocacy, the courses that she took at Elon and her volunteer work as a student, Avery learned to better communicate with the people around her. It’s a skill that has proven invaluable during her work with the NFL, as an independent consultant with the NFL Foundation.

“I learned to connect with people from all walks of life. That has been a very important skill that has given me the ability to speak with nonprofits, youth or high school administrators, NFL club representatives, current or former NFL players, and others that I work with daily in my current role,” she said.

She was introduced to the NFL Foundation after an internship with the community relations division soon after graduating from Elon. The nonprofit is dedicated to improving the lives of those touched by the game of football, from players at all levels to communities across the country. “It’s been seven years now, and it’s been a great experience,” said Avery.

In her role, she manages more than 50 grant programs with other colleagues. “I love reading about the incredible work organizations are doing and being able to support them. My favorite thing to work on is our annual report. I’m able to use my creativity to showcase the impact our department has on others,” Avery said.

The most rewarding part of her career so far was being named one of the “Top 10 Under 40” by South Tampa Magazine in 2021. Avery said it was really special to be recognized by her hometown, particularly during the COVID-19 pandemic when she was also struggling personally with the passing of her grandmother. The surprise of being named to this list brightened an otherwise difficult time in her life.

Avery '16 poses for a photo on the field at an NFL game.
Avery ’16 poses for a photo on the field at an NFL game.

She earned an MBA with a concentration in nonprofit management from the University of Tampa in December 2022 and has continued her volunteer work with the Friedreich’s Ataxia Research Alliance (FARA).

Her family has hosted the FARA Energy Ball in Tampa for the last 15 years. Since moving back, she has been involved as the event raised $2 million for Friedreich’s Ataxia research last year. She also supports the alliance by speaking at in-person events and online, even meeting with politicians on Capitol Hill to advocate for the alliance’s goals.

“Earlier this year, FARA announced the first FDA approved treatment for Friedreich’s Ataxia. My family and I flew out to Dallas and spoke with the drug company on the day it was approved. This is only the beginning of a very exciting future,” said Avery.

As for her future, Avery said that she has become increasingly passionate about disability rights, specifically accessibility and addressing the issues many people have when navigating insurance. She would love to work in this field to help others. 

“I hope to stay happy and healthy myself, but would love to start my own nonprofit or support one that focuses on disability advocacy,” she said. 

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