On Sunday May 10th, 2015 at 10:00 AM a 5K run/walk, 1K kids fun run (9:30 AM start) will take place benefiting the Our Promise to Nicholas Foundation. This is their first race in honor of Nicholas. The Our Promise to Nicholas Foundation began in 2009 after Nicholas was diagnosed at age 5 with a neurodegenerative brain disease called Batten Disease. The town of Bedford NH stood by Nicholas and his familys’ side, believed in them and encouraged them to fundraise for a cure to this childhood brain disease. Ever since then, they have been successfully fundraising, bringing families and children together to provide education and supporting research to battle Batten Disease. We are so proud of the community who has gather together to support our efforts. Sadly Nicholas passed away on May 9, 2014 on his 11th birthday.
On the day he passed away our community of Bedford NH wrapped their arms around our family. Over 100 people came to our house and let go green balloons in our yard. We were so honored and touched. On this one year anniversary, with our sponsoring partnerships from the Bedford Ambulatory Surgical Center of Bedford and Alkemy Partners of Amherst we are creating a new memory of hope and community. So in Nicholas’ memory and the town of Bedford’s honor come join us for the first ever GREAT GREEN BALLOON RACE. Held at Ross A. Lurgio Middle School, Bedford, NH we will start and finish at the school (47 Nashua Road). Cost is $35.00, $15.00 for children, including a race shirts, food and entertainment. Special appearance by Anna and Elsa from Frozen as well as Joe the Green Kangaroo from Nashua Trampoline Launch Park. Balloon release, music and food it is a wonderful way to spend your day. Register on line at www.racereach.com/r/great-green-balloon-race-5k-run-walk. Questions for the event please contact [email protected]
Hope you can be part of this fun event!
With your attendance at the race the OPTN will be able to continue to support the following:
1. Nursing Coverage – The national Batten disease organization (BDSRA) hosts an Annual Batten disease family conference in July, where families with their affected children come to receive support and information. During the five day conference each child with Batten needs continual expert medical attention.
2. Research Grant Support: To Benefit Two Exciting & Essential Research Projects Focused on Stabilizing Mutated Proteins that Cause Batten*, and a State-of-the-Art Patient Database. For more information about Our Promise to Nicholas Foundation, please visit our website at: www.ourpromisetonicholas.com.