My little sister, Taylor, ran two 5Ks after losing her vision to Batten disease. 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 next year, I decided to run in all 50 states to support 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.
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 succeed, my races 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. 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 used to seeing Batten disease in their clinic on a regular basis.
Thanks for supporting my effort and children like Taylor!