Date :Saturday June 21, 2014
Time: 1:30 PM
Place: Stonebridge Country Club, 161 Gorham Pond Road, Goffstown NH
To sign up and Sponsorship: click on the DONATION/GOLF SIGN UP on the left panel of the web site. Then click on Events: Scroll down to Golf Tournament and Dinner Please join us at scenic
Stonebridge for a special day and evening event to raise funds for Batten Disease Research. Featuring an 18 hole golf scramble, team prizes, hole prizes, raffles, silent auction, cocktail reception, music and dancing! Dinner is your choice of Clam & Lobster Bake, Grilled Chicken or Prime Rib. 100% of proceeds go directly to fight batten disease.
Contact: heatherdainiak@hotmail.com or 603-785-4249 any questions
Thank you for your love, support, letters, calls, cards, emails, meals, flowers and more. Chris and I feel very blessed by everything that has done for us in the past few weeks since Nicholas passed away on Friday May 9, 2014. We miss him so much but feel we are fortunate he was with us for 11 years. We are lucky he was ours and will cherish our memories with him forever. We are going to continue our promise to Nicholas and other children with Batten disease to work hard toward finding a cure for this horrific disease.
Our Promise To Nicholas and God Bless you and your families.
Heather Dainiak
Our Promise to Nicholas Foundation: The Battle with Batten; Realizing the Promise
by Lisa Kaveney
As a young child Nicholas Dainiak of Bedford, NH had exuberance and energy, curiosity and humor, he was loved and gave that love to others. However, at age 5 he was diagnosed with a rare and fatal neurodegenerative disease that affectsthe brain and central nervous system, called Batten Disease. With an inconceivable diagnosis and family desperate for action, in 2009, the Our Promise to Nicholas Foundation (OPTN) was created by his parents, Chris and Heather Dainiak. OPTN’s mission is to raise funds and mold partnerships to promote awareness, provide education and fund the development of research to fight Batten Disease. Sorrowfully, Nicholas, age 11 lost his battle with Batten on his birthday, May 9th 2014. Nicholas showed all who touched him how to live. He could not see, but he gave others a truly beautiful picture of what a meaningful life could be. His body was still, but he raised a community to a grand movement. He could not speak, but his voice soared with a message of hope and healing. His spirit about life and love gave his family and friends the determination and enthusiasm to combat such a debilitating disease. By creating OPTN, the Dainiak’s found meaning in their child’s suffering. “We have been taught so much by our son Nicholas, he showed us what was important in life and how to live as full of life as possible,” said Chris. In turn, Chris and Heather embody humility and compassion for others and have shown a remarkable ability to see beyond their family’s issues. They radiate positive energy and the imprint of their lives has impacted a community in ways that cannot be described. Their passion and extraordinary accomplishments for raising awareness and research money for OPTN has only increased through the last 6 years, and is now stronger than ever. Hundreds of volunteers have organized events including, fundraisers, walkathons, golf tournaments, parties, and activities to meet the challenge and touched the lives of thousands. Additionally, an international conference held in March 2014, brought scientists and other medical personnel together from around the world, organized and financially supported by the OPTN in collaboration with other Batten’s Disease Non-profits. The ‘Promise’ is being realized, but there is more to be done. In Nicholas’ short 11 years he has given us longevity of hope that one day there will be a cure for Batten Disease. His life changed the lives of many and the Our Promise to Nicholas Foundation will passionately continue to strive in their mission of promoting awareness, funding education and research to one day find a cure for Batten Disease. “Nicholas’ life was a gift, and we are glad that gift was given to us. We have the opportunity to do something special” said his father, Chris Dainiak. In keeping their Promise to Nicholas, OPTN will be there for others, battling Batten, with Nicholas’ spirit teaching the community about love and grace, inspiring the fortitude of optimism and courage; this is a life remembered.
