Andrea & David's Story

Andrea Peet: Sets Her Own Course in a Race Against ALS

Andrea_Peet.jpgAndrea Peet’s life was taking off. She finished graduate school, married, launched her career and was running marathons and triathlons. Then in early 2013, after Andrea competed a triathlon, something felt off. During the race she tripped over her toes, her hamstrings were tight, and post-race her body continued to feel stiff and slow. Suspecting injury, she scheduled an appointment with a physical therapist who suspected her condition might be neurological rather than muscular.

As Andrea’s physical condition worsened without a confirmed diagnosis, her speech became more difficult to understand “I had gone from the strongest I’ve ever been to walking with a cane after only eight months.” Then, in May 2014 — after months consulting numerous neurologists and specialists — Andrea received a diagnosis of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, at the age of 33-years-old.

“After I received the ALS diagnosis, I thought I was a goner,” Andrea said candidly. With the average life expectancy of two-to-five years and no cure, receiving a definitive diagnosis was the moment Andrea said, “I just don’t have any more time to waste. If there is anything I want to do, I need to do it now before my body stops me.”

Launching into Activist Mode

Andrea_Peet1.pngAndrea decided to focus on what her body could do by completing her last triathlon. “I was last by like an hour,” she chuckled. “So many people stayed to cheer me on. It was then I realized I could use my story to inspire people to just appreciate what their bodies can do.”

In 2016, Team Drea was formed as a non-profit that has since raised $850,000+ for ALS research. At the same time Andrea continued as people came on board, "I just kept riding and racing and blogging, while I waited for ALS to take over. But it didn't."

In the summer of 2019, having surpassed the average life expectancy for a person with ALS, Andrea dreamt up her biggest challenge yet — to complete 50 marathons in 50 states — the first person with ALS to do so. There was concern about the impact this would have on her physical well-being.

Her husband David shared, “You know, her doctors don't know what to think about her. She is in many ways an anomaly because of how long she's been able to live (8+ years) and what she is still able to do with ALS. The medical literature might be split on what exercise does for ALS — but it might help people to extend their timelines and have longer and more fulfilling lives.” And this hope for a better future for others is Andrea’s driving force.

Patient Advocacy — Helping Others

In 2019, while building momentum around Team Drea and its efforts, Andrea became a member of Parexel’s North American Patient Advocacy Council (PAC). She was inspired by the experience with her PAC peers and saw how the impact of advocacy work in other disease areas can serve as an example to the ALS community. “To see how much further cancer drugs are from where we are — “If this doesn’t work anymore, we’ll try this” — it’s a good perspective for me to have.” She appreciates Parexel because our organization “cares about how to make trials better for patients. And that takes us working together on the trial design, because we all want the same thing — and are working toward the same goal.”

Andrea_Peet2.pngAlso informing the Andrea’s perspective was her enrollment early in an ALS clinical trial. When asked how she would design more patient-centric clinical trials, Andrea says, “Everything could be geared more toward patients. Everything with ALS is challenging anyway. And then if you can’t write or speak or it's just hard to get around but your mind is there — lean into the healthier side of the patient with the trial design.”

Steadfast and determined in his support for Andrea, David added. “Put yourselves in the frame of mind of the person with ALS who is a part of the study. If eligibility starts at three years after symptom onset and it takes a year to get diagnosed and life expectancy is between two-to-five years of symptom onset, this is it. This is their one opportunity to contribute their body to science, which is something they have willingly chosen to do.” According to David, the trial should be designed so that “the person who is voluntarily choosing to spend some of their last remaining time on Earth is comfortable, accommodated and appreciated for what they're doing.”

Living life on her own terms

On Saturday, May 28, 2022, Andrea rolled over the finish line at the ​​Prince of Wales Island Marathon, her 50th in 50 states. In an interview with Endurance Sportswire at the end of the race, Andrea said, “My body is capable of incredible things, even as it fights a battle with this sad and scary diagnosis. While the goal to finish 50 marathons in 50 states is complete, my true goal is to inspire others to be brave and appreciate what their bodies can do. We’re only at the starting line in that regard, and I’m looking forward to seeing what comes next — for me, our foundation and the ALS community.”

‘Raising money for ALS research is the only way that we will make progress toward curing the disease.’ “So, one day, no other family has to go through it!”