Our Promise to Nicholas Foundation- named after Nicholas Dainiak of Bedford, NH, OPTN was established in 2009 as a non-profit charitable foundation.  Nicholas's parents Heather & Chris (Noyes) Dainiak are natives of Sudbury and his grandmother Dotty Noyes has worked at Russell's Garden Center in Wayland for over 20 years. At age five, Nicholas was diagnosed with the rare genetic brain disorder called Batten Disease. This disease affects an estimated two to four children out of 100,000 born in the United States. Batten causes seizures, blindness, dementia, immobility and eventually requires twenty-four hour care. The cruel part of this disease is that these children are vibrant and healthy until it takes its course around the age of four. Eventually Batten takes over the brain, causing a child to die between the ages of eight and twelve.

John was a friend and competitive runner who dedicated 5 years of his life running for Nicholas. He passed away in 2013 while running the NYC half marathon. Sadly, Nicholas also lost his battle to Batten on May 9, 2014, on his 11th birthday. In keeping our promise to Nicholas and John, we continue to work toward a cure for this childhood disease. Please consider making a tax-deductible donation to the 5th Annual John Tanner Pumpkin Shuffle 5 K.  Your support will make a difference in the lives of children with Batten Disease, and help us keep our promise.

Money raised by Our Promise to Nicholas Foundation will go toward a 3rd year of funding a natural history and bio-repository database at MGH and University of Rochester. The money raised will go toward a 5th Batten Disease scientific conference hosted in the spring 2019 in Bethesda MD. Lastly, Our Promise to Nicholas Foundation funds nursing care for children attending the family support conference each summer with the BDSRA (Batten Disease Support and Research Association). Thank you for your support.