New Hampshire was special.
Heather and Chris Dainiak established the Our Promise to Nicholas Foundation in 2009, not long after Nicholas, the older of their two sons, was diagnosed with late infantile Batten disease. Heather and Chris promised Nicholas they would work tirelessly to find a cure for the monster stealing his sight and motor coordination and wracking his body with seizures. continue reading →
Colorado snuck up on me.
My house sold the weekend I ran the Auburn Running Festival Half Marathon in late March, and I spent most of April packing, moving to a temporary apartment and working with a builder to finalize plans for our new home. I spent most of May catching up on all of the life stuff I’d let slide in the midst of the sale and move, like writing and supporting Taylor’s Tale.
Needless to say, I didn’t spend much time training for state number 13 or pitching my story to local media. And when I boarded a plane for Colorado, I thought I’d be happy just to finish the race. continue reading →
When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
Last month I ran the Auburn Running Festival Half Marathon, marking state number 12 in my quest for 50. continue reading →
When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
Martha’s Vineyard is a unique island, with beautiful beaches and oak forests and a scattering of towns. It’s a vacation favorite of movie stars and writers and politicians.
But most people visit the island when it’s warm. continue reading →
When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
When Taylor was diagnosed with infantile Batten disease in 2006, the doctor advised my parents to take her home and love her. “There’s nothing you can do,” he said.
But giving up wasn’t good enough for them or anyone in my family, least of all Taylor. continue reading →
Four weeks from today, I’ll run my seventh race of an injury-shortened 2015, crossing off state number 10 in my quest for 50.
Along with my mom, Taylor’s Tale President Sharon King, I’m headed to The Keystone State’s largest city, Philadelphia. But I’m not running in a large event like the local Rock ‘n’ Roll Half Marathon or Philadelphia Marathon. Instead, I’ll take on the Bryn Mawr Running Company’s Schuylkill River Loop Race, a cult favorite since its founding in 1972. continue reading →
I found myself in a funk early this summer, right about the time the nights turned muggy and the lightning bugs lit up the sky and the air filled with the smells of honeysuckle and fresh-cut grass and charcoal grills.
I remember thinking, what gives? I’d just finished writing a book, and I had a trip to Hawaii on the calendar, and great things were happening for Taylor’s Tale – both in the NC legislature and in a gene therapy lab at UNC. On top of everything, my little sister was mostly stable after a tough spring. continue reading →