We are happy to announce the seventh annual Our Promise to Nicholas (OPTN) Easter Egg Hunt is scheduled for Saturday April 4th at the NH Sportsplex in Bedford, NH. This popular charitable event — attended by more than 1,200 people last year, raised $20,000 — would not be possible without continued support and donations from community members and businesses like you.
Named after Nicholas Dainiak of Bedford, NH, OPTN was established in 2009 as a non-profit charitable foundation. 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.
Sadly, Nicholas lost his battle to Batten on May 9, 2014, on his 11th birthday. In keeping our promise to Nicholas, we continue to work toward a cure for this childhood disease.
- Last Year’s Egg Hunt Raised $20,000!
- Benefited the International Scientific Conference for Batten Disease
- Help us KEEP THE PROMISE…to reach $30,000!
- To Benefit Two Exciting & Essential Research Projects Focused on Stabilizing Mutated Proteins that Cause Batten*, and a State-of-the-Art Patient Database**. * Rosalind Franklin University School of Medicine and Science, Chicago & Sanford Research Center, South Dakota. ** University of Rochester & Harvard University.
Please consider making a tax deductible donation to the seventh annual OPTN Easter Egg Hunt. Your support will make a difference in the lives of children with Batten Disease, and help us keep our promise to this important and worthwhile cause.
For sponsorship and more information, about this event and additional ways in which you can help, please contact Suzanne Bergeron at firstname.lastname@example.org or Heather Dainiak email@example.com. On behalf of OPTN and the Dainiak Family, thank you for your time and generous support.
UPCOMING EVENTS FOR OPTN 2015
Green Balloon 5K Run/Walk in honor of Nicholas Dainiak Sunday May 10, Lurgio Middle School, Bedford NH
7th Annual Fore! Nicholas Golf Tournament Saturday June 20, 2015 Stonebridge Country Club, Goffstown NH
John Tanner Memorial 5K Run/Walk- October 2015 – Exact Date To be Determined- Wayland MA
New EVENT !!! Quizine for a Promise- November 2015 More information to come! Location- Bedford NH
PS – More information will be posted on the Our Promise To Nicholas web site. Please check back soon.