Move For Jenn: How a cancer diagnosis turned into passion for access and change

The following blog was written and shared by our friends at Fleet Feet Sports.

---

Move For Jenn: How a cancer diagnosis turned into passion for access and change When you love running and something gets in your way, it’s tough. If you’re a runner, it’s likely that you’ve faced injury, illness or life events that kept you on the sidelines for days to months or longer. For some runners, the hurdles are higher than others. It’s Disability Pride month, and disability is complex and different for everyone. Some people are born with a disability, and others have life circumstances that change their bodies and create obstacles later in life. For Jenn Andrews of Charlotte, NC, it was the latter. In 2013, Andrews discovered a bump on her right foot, which she had removed the following year. But the growth returned in 2018, this time as a layer covering the top of her foot. It turned out to be sarcoma, a rare type of cancer that eats away at bones and tissue.

A life-changing decision

Andrews was faced with a terrifying decision: amputate her foot to eliminate the cancer from her body completely, or risk that it would spread and threaten her life. As a runner, Andrews says the idea of losing her foot, and her ease of mobility, was gut wrenching. It took away her sense of invincibility. “Even though I had experienced sickness and death with other people, when it's something that affects you personally, it changes your perspective on life, " Andrews says. “So when I was diagnosed the second time with my recurrence, that really made me realize that something like this can happen to anyone.” On March 7, 2018, five days before the surgery to amputate her foot, Jenn hosted a Facebook Live for her friends and family. She asked viewers to get out and move however they liked on the date of her surgery. The idea was for them to be active in honor of Andrews and everybody who wants to move, but can’t because of a loss of mobility. What she didn’t expect was that the post would go viral and become a movement. “I remember in my initial appointments, I was crying and talking to my doctor and I said, ‘am I ever going to walk again?’ I didn't know anyone with a prosthetic. And he said, ‘walk again? I hope you run.’ And that triggered something in me like, oh, that's possible.”

The Cost of Prosthetics: Anger turned to action

After the amputation of her foot, Andrews had big goals that she wanted to pursue before the year was over. First, she wanted to walk with her prosthetic without crutches. After that, she aimed to start running, and to complete a 5K run. However, running and other physical activities, like swimming, require different types of prosthetics built for that type of motion and impact. When it came time for Andrews to be fitted for her walking prosthetic, she asked about running blades, too. After all, her doctor hoped that she would run again. She was told that while it’s important for amputees to be physically active, insurance companies won’t cover the cost of activewear prosthetics, which can cost anywhere from $5,000 to $50,000. What’s more, due to wear and tear, they need to be tweaked or replaced every three to five years. Andrews says she left the appointment angry, thinking of all the people who couldn’t be active after an amputation because of the cost. “I know how much having cancer costs financially because my family dealt with it,” she says. “There are so many families that are in debt because of medical traumas, so the idea of having this added expense after surviving this tumultuous situation…I couldn't understand. Insurance wants you to improve your health so they don't have to pay for other things, but they don't want to pay for the tools to allow you the mobility to do those activities.”

Pictured: Jenn Andrews runs with a running blade prosthetic.

The experience triggered the creation of the Move For Jenn Foundation. “It became my life's mission to help other people who were going through the same thing I went through,” Andrews says. “I knew how alone I felt, and if I could be that resource for someone else, I wanted to do that.” It’s well-known that exercise is important for human health, and Andrews says it’s particularly important for somebody going through trauma or who has lost an ability. “If there's a tool and there's a way, there should be access,” she says.

Move For Jenn is born

Despite the difficulties she faced in 2018, Andrews hit the ground running and achieved her goals by the end of the year. She walked without crutches within eight weeks of her surgery, then started to run and completed a 5K race within six months of her amputation. Then her foundation was formed and financed an activewear prosthetic for her first applicant by December of 2018. The mission of the Move For Jenn Foundation is to offer grants in the form of activewear prosthetics to those who have suffered the loss of a limb to sarcoma or other affiliated diseases. They also raise funds for sarcoma research, advocacy and awareness in an effort to find a cure for sarcoma and improve treatment options for sarcoma patients. Since the organization was started in 2018, it has grown each year, by raising more funds for Sarcoma research helping more individuals get the grants to access the prosthetics they deserve to get and stay active. Pictured: Cortney Robateau receives a running blade. Photo by Morgan Amanda Photography.

“My favorite part of Move For Jenn is that none of it's about me. It's about the people we help, the trials we fund and the people we mentor. It was about me at first, but it's not about me anymore,” Andrews says. Move For Jenn has helped applicants of all ages and with various goals. “We do anything from helping parents who just want to chase their kids outside, to Paralympic athletes,” Andrews says. In 2022, Move For Jenn awarded 16 prosthetics to applicants, and gave $35,000 for sarcoma research. In addition to prosthetics, Move For Jenn has created a community for sarcoma survivors. They gain mentorship and connection to others who have endured a similar situation or have a similar lifestyle. Andrews says that the gratitude she has received from recipients is tremendous. “It's just amazing what the tools we've been able to provide have been able to do, and seeing people in their elements snowboarding and skiing and doing all the things, it's just amazing.” Pictured: Grant recipient Kyle Stepp. Photo by Kyle Nowaczyk.

What’s more, since prosthetics need to be replaced regularly, and athletes often need more than one type, Move For Jenn will help applicants multiple times, as needed. “Giving a grant each time heals a part of me that nothing else can heal. And so every time I give a grant and give a prosthetic, I get to help somebody replace something that cancer stole away from me and cancer stole away from them,” Andrews says.

 

 

Pictured above: Grant recipients Addison, Nicola and Carson

What the world should know about disability

We asked Andrews what she wished the world knew about disability and limb differences. This is what she shared:

1. The word “disabled” can be polarizing.

Some people with limb differences or mobility challenges identify with that word while others don’t. “I don't look at myself like I'm disabled,” Andrews says. “Life can be challenging for certain activities, but there's nothing I don't do now in a prosthetic that I didn't do before. I just had to find a new way of doing it. I think the word disability can sometimes be triggering to different people depending on what you've been through.”

2. Don’t judge what someone is capable of based on a disability.

“There’s nothing wrong with asking questions in the right contexts, but don’t prejudge what someone's capable of just because of a disability.” Andrews explains that it’s important to allow people to share their stories, but not every disabled person will want to talk about why they're disabled. “For me, especially because I had young kids when this happened to me, I have no problem with kids or adults asking me what happened. I have no problem with kids coming up and touching my prosthetic and wanting to ask questions about how it works."

3. Don’t pity people with disabilities.

“I’d like to remove the pity that people have,” Andrews says. “I don't like that. People will come up to me and say, ‘Oh, you're such an inspiration.’ But I don't really feel like I'm an inspiration. I was just dealt a really hard hand and I chose to do something positive with it. But it also really helped me because it gave me a chance to redirect my focus [by creating Move For Jenn].”

Get involved

Would you like to support Move For Jenn and help an amputee get and stay active? Learn more.