July 2014

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 has launched a sister organization called Batten Research Alliance. www.battenresearch.org. I will be keeping Our Promise To Nicholas Foundation Web site with updates on our fundraisers and family and it will remain my personal web site. My father in law Dr. Nick Dainiak, Our Promise To Nicholas Foundation scientific director will be the director of this web site. He will be in contact with the scientists and doctors specializing in INCL and LINCL. As he did at the 2013 scientific conference. This will be a site for the scientists to submit grants for funding and also for all doctors caring for our children. For more information about the site please contact my father in law at nickdainmd@aol.com

If your interested in sponsorship please contact me at heatherdainiak@hotmail.com

Your logo will appear on the web site as a sponsor with the Our Promise To Nicholas foundation Logo

Here is more information about the web site and organization:

By Nicholas Dainiak, M.D. :

A new organization has been developed for the purpose of development of a web site that will have two functions: (1) submission and communications between scientists in the field of Batten Disease research and staff of the organization; and (2) education of health care professionals and families regarding the natural history, complications and management of children with Batten Disease with a particular emphasis on INCL/LINCL.

The tentative name of this organization is the “Batten Research Alliance” with the unique URL of “battenresearch.org”. The tentative email address of this site is www.battenresearch@gmail.com. The name, URL and email address are simple and easy to remember.

A secure web site will be developed that is capable of announcing new and existing grants programs in INCL and LINCL research; instructions to applicants and guidelines for research applications; submission of research grants that meet requirements of the program; confidential review of research proposals by scientists in the relevant field; confidential transmission of critiques to principal investigators and announcement of results to the applicant and the applicant’s organization; and other communications between applicants and the organization’s staff. File formats will include word documents, pdf files and jpeg files. Applicants will have the option of both direct electronic submission and download/print out/completion of the application.

The educational program will provide just-in-time information on the diagnosis and clinical management of Batten Disease. It will include written information and video interviews with expert clinicians that will be updated annually. Topics will include general background information on Batten Disease (BD), genetic profiles of BD subtypes, diagnostic criteria for BD, information of centers specializing in the management of BD, current recommendations on multidisciplinary clinical treatment, experimental treatments and ongoing clinical trials, and resources such as glossary of terms, differential diagnosis flashcards and helpful hints, including medical coverage of complementary services (ie, rehabilitation, speech therapy, physical therapy, educational aids, etc.) and equipment (ie, special postional equipment, hospital beds, wheelchairs, lifts, chest PT, etc.).

The time frame is have the research portion of the site on line by mid June, 2014 in order to meet deadlines for grant submission and assessment for funding to begin in February, 2015. The educational portion of the site should be on line by February, 2015.

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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 9^th 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.