Kelsey Prendergast is running Boston for NORD. Here’s why.

"Having PKU, a rare metabolic disorder where my body cannot break down phenylalanine, an amino acid found in protein, NORD has played a crucial role in my life."

–Courtesy

In our “Why I’m Running” series, Boston Marathon runners share what’s inspiring them to make the 26.2-mile trek from Hopkinton to Boston on April 15, 2019. 

Name: Kelsey Prendergast
Age: 26
From: Norfolk, Virginia (from Watertown, Massachusetts)
Bib #: 29621

I am running on the Running for Rare team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research, and financial assistance services. Having PKU, a rare metabolic disorder where my body cannot break down phenylalanine, an amino acid found in protein, NORD has played a crucial role in my life. NORD has provided copay assistance for my extremely expensive PKU medications that have allowed me to achieve not only my academic and career goals but also my lifelong personal goals such as running the Boston Marathon.

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Growing up in Watertown, Massachusetts, the Boston Marathon has always been an inspiration to me, and I am so incredibly grateful to have the opportunity to run it for NORD. I looked up to so many of the Boston Marathon runners as a little girl and hope that I can offer similar inspiration to future runners with PKU and other rare disorders.

My Running for Rare partner I will be running for are the Caldens and their beautiful baby girl and fellow PKU-er, Camryn Calden (Cam). I met Cam’s dad over 10 years ago, when we worked together for six summers at Camp Pequossette in Watertown. Cam is 1 and, just like me, was diagnosed with PKU a week after she was born. The Caldens quickly began their introduction to life with PKU with the support and guidance of the incredible team at Boston Children’s Hospital.

I am extremely honored to have this opportunity to run for Cam and others like us, who have to eat certain foods or drink special “formula,” and not let our PKU or rare disorder define us but instead turn our obstacles into opportunities.

Check out our entire “Why I’m Running” series.

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Editor’s note: Entry may have been lightly edited for clarity or grammar.