Arizona is state number 20
January 02, 2018
My little sister, Taylor, ran two 5K races after losing her vision to Batten disease, a rare, fatal disease that strikes mostly children. Today, Taylor is not only blind - she also can't walk, talk or swallow food, and she suffers seizures. My sister can no longer run, but her courage continues to inspire the fight against Batten disease and other rare diseases.
In 2013, I ran a half marathon blindfolded to honor Taylor. The following year, I decided to run a race in all 50 states to support the millions of Americans who, like Taylor, are battling a rare disease. I personally fund all travel and related expenses, so every dollar donated goes directly to Taylor's Tale, a 501(c)(3) non-profit organization dedicated to creating better tomorrows for people like my sister.
I set my fundraising goal to $127,500 by combining individual goals for each of 50 races. For example, $100 for the first state, $1,000 for the 10th state and $2,500 for the 25th state, building up to $5,000 for the 50th and final state.
If I achieve this goal, my runs will cover most of the cost to create the first Standard of Care for infantile Batten disease. Taylor's Tale is funding the Standard of Care, working closely with the Batten Disease Support and Research Association on development. This crucial plan will improve quality of life for patients and their families by providing a roadmap for their care providers, most of whom are not accustomed to seeing Batten disease on a regular basis.
Thanks for supporting this effort!