John Tanner Memorial 5 K Run/Walk
Date: Sunday October 19, 2014
Time: 11AM
Location: Wayland Town Hall: 41 Cochituate Road, Wayland, MA 01778
SPONSORSHIP : Click on button on the left that says: MAKE DONATION/GOLF SIGN UP- click on EVENTS- this will bring you to the golf sponsorship page.
To SIGN UP: Click on this link : http://www.racewire.com/event.php?id=2353
On Sunday October 19, 2014 the Our Promise to Nicholas Foundation (OPTN) will host the second annual John Tanner Memorial 5K Run. The race will start at 11am behind the Wayland Town Hall on Pelham Island Road heading west 2.5k and then return east on Pelham Island 2.5k to finish behind the Wayland Town Hall. All proceeds will go to support Batten disease research.
Directions/Parking: 41 Cochituate Road, Wayland MA 01778 ; Link to parking behind the Wayland Town building http://www.wayland.ma.us/Pages/WaylandMA_WebDocs/directions
For: RACE SIGNUP go to: WWW.RACEWIRE.COM; For Sponsor Sign-up Click on the button TO MAKE A DONATION to the left! Then click on EVENTS
John Tanner was a longtime friend and employee at Russell’s Garden Center in Wayland, MA, who unexpectedly passed away while running the NYC half marathon this past spring. John was an exceptional athlete and competitive runner who devoted all of his races over the past 5 years to raising awareness about Nicholas and Batten disease. He was a wonderful person with amazing kindness and devotion to help others. We are blessed that he chose to help Nicholas.
Contact: Amy @ Amybnoyes@gmail.com
Our Promise to Nicholas Foundation has worked hard during the past 6 years to directly fund worthy research initiatives and we organized our second international scientific conference in partnership with the National Institutes of Health and other Batten disease foundations. We have also just launched our sister organization called Batten Research Alliance with the web site below.
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BATTEN RESEARCH ALLIANCE
www.battenresearchalliance.org
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.