My name is Dan and I am running the 2019 Boston Marathon as a part of the Credit Unions Kids at Heart team to raise awareness and fund scientific research aimed at the prevention, treatment, and/or cure of pediatric neurological diseases.
This will be my 5th year running the Boston Marathon. Running the marathon is definitely not an easy task, but I’ve found it’s much easier when you’re passionate about your cause. As a part of the CU Kids at Heart team, each runner is paired with a Boston Children’s Hospital Patient Partner. Each patient partner is a child who has received, or presently receives, care and treatment from BCH, man receiving treatment for debilitating diseases. 100% of the money we raise is donated to funding scientific research of Moyamoya Disease, Sturge-Weber Syndrome, Pediatric Brain Cancer, Cerebral Palsy, and now Pediatric Epilepsy
This year, I am paired with two amazing patient partners - a brother and sister duo, Matty and Kayla. Matty has been my patient partner since 2016. Matty is a curious, inquisitive, and extremely sociable 14 year old. He’s very enthusiastic about the CU Kids at Heart Team and can talk your ear off about any one of his many interests. You might never guess that he has been diagnosed with autism. His sister Kayla has been my patient partner for two years now. As an infant at just 4 weeks old, she was diagnosed with heart murmurs. From there she had a harrowing journey with many heart and brain defects. She was finally diagnosed at the age of three with Mitochondrial Encephalmyopathy, a rare disorder that mostly affects the brain, nervous system, and muscles. Since that diagnosis, Kayla has defied all odds and is even a proud high school graduate.
Matty and Kayla both have been a part of the CU Kids at Heart Team as Patient Partners for much longer than I have been a part of the team, but it has been a blessing and a pleasure getting to know them both over the years. As a part of this team I have been given a unique opportunity to gain insight into the lives and treatment journeys of Matty, Kayla, and the many other CU Kids at Heart Patient Partners. These children surprise me every day with the way they overcome struggles and challenges, delight in everyday victories, exhibit unwavering strength, and project love through it all.
As the proud father of a rambunctious young boy, I am reminded every day how precious life is and what a tremendous difference Boston Children's makes in the lives of so many children. It never ceases to amaze me when the incredible power of months of fundraising and training come to fruition in the form of new research and treatment advancements that hold the promise of a brighter future for so many children affected by these conditions.
So many patients at Boston Children’s Hospital, including my patient partners Matty and Kayla, rely on us to help them. I ask you to help our cause by making a donation in any amount that you can. Every gift is greatly appreciated and will go towards transforming the lives of children who spend each day fighting, not knowing what their future holds.
Thank you for taking the time to read through our fundraising page. I hope to see you along the route in 2019! Since 1996 the credit union community has collaborated through the Credit Union’s Kids at Heart program to help children and their families with fundraising efforts that benefit Boston Children’s Hospital. The Credit Union’s Kids at Heart team raises the majority of its funds by participating in the Boston Children’s Hospital Miles for Miracles Patient Partner Program.
To donate in honor of this runner, please call the CU Kids at Heart coordinator at 800.428.1144, Ext. 3320, or mail a check to: CU Kids at Heart, 35 Corporate Drive, Suite 300, Burlington, MA 01803. Please make checks payable to “CU Kids at Heart” and add the name(s) of the runner(s) in the check’s subject line.