A little later than last year but I am so excited to announce I’ll be running the 2019 Boston Marathon as part of the National Organization for Rare Disorders (NORD) Running for Rare team! I will be fundraising to raise $6,000 in support of 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.
I ran (swam is really more like it) the 2018 Boston Marathon and despite the horrible conditions last year, I was instantly eager to come back for more! Growing up in Watertown, MA, 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, an organization that helps me and so many others with PKU every day. 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 & other rare disorders.
Running as part of the Running for Rare team, I have the opportunity to run for an individual or family with a rare condition and NORD graciously asked if I had a family in mind to partner up with. I instantly thought of the Caldens and their beautiful baby girl and fellow PKU-er, Camryn Calden (Cam). I initially met Cam’s dad over 10 years ago, when we worked as camp counselors together for 6 summers at Camp Pequossette in Watertown. Cam will turn 1 in February 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.
My connection with NORD will help make my 26.2 mile run on April 15, 2019 even more meaningful, but first I need your help to get me to the finish line! Any and all donations to NORD Running for Rare will make a difference. Thank you!!