July 2015

June 29th, 2015

John Tanner Memorial  5 K Run and WalkIMG_1278

DATE: Sunday October 4, 2015

TIME: 11:00 AM

PLACE:  41 Cochituate RoadWayland , MA- Wayland Town Building

NEW: Johnny Rocket 1 K Run for kids 10 and under.

Register: Johntanner5k.racewire.com  CLICK HERE! 

Sponsorship Opportunities: please contact heatherdainiak@hotmail.com

On Sunday October 4, 2015 at 11 a.m. the Our Promise to Nicholas Foundation (OPTN) will host its third annual John Tanner Memorial 5K Run and Walk. The race will start and finish behind The Wayland Town Buildings @ 41 Cochituate Road Wayland, MA.
All proceeds will go to support Batten Disease Research.

The John Tanner Memorial 5K Run and Walk is dedicated to the memory and legacy of John Tanner and Nicholas Dainiak of the Our Promise to Nicholas Foundation. John Tanner was an exceptional athlete and competitive runner who unexpectedly passed away while running the NYC half marathon in spring 2013. He devoted all of his races over the past 5 years to raising awareness about Nicholas and Batten disease.

Nicholas, our son, lost his battle with Battens Disease on May 9, 2014 on his 11th Birthday. He was diagnosed 7 years ago with a life threatening brain disease known as Neuronal Ceroid Lipofuscinosis, or Batten disease. Children with this disease suffer from seizures, blindness, dementia, immobility, and will typically die between the ages of eight and twelve. Batten disease is potentially curable if given enough support for research.

Where your money went in 2014

  • International Scientific Conference- Held in March in Bethesda Maryland. This two day conference hosted medical researchers, doctors and scientists who came together to review and discuss the latest medical advances in the fight to cure Batten Disease. OPTN has funded this conference in 2013 and 2014.
  • Batten Research Alliance (BRA) Scientific Web Site- This site is being developed with hopes to bring the Batten Families together by providing needed medical information, link the medical experts to each other and provide a portal for receiving research grant proposals.  Visit www.battenresearch.org

Help us keep our Promise for 2015/2016

  • Research Grant Support- OPTN has committed to support two exciting & promising research projects for 2015:
  • The first project is developing a natural history and biorepository database for INCL and LINCL (Harvard University & Univ. of Rochester). OPTN has committed to fund this project $100,000.00 x 3 years. This study received the highest score when it was submitted through the BRA (Batten Research Alliance)- which is our sister organization.
  • the second project  focuses on stabilizing the mutated proteins that causes Batten Disease (Rosalind Franklin University School of Medicine and Science, Chicago & Sanford Research Center, South Dakota).  This study below came in second and was awarded $25,000.00 to complete a proof of concept. With the hopes of a positive outcome this will allow us to support future funding for this study.
  • Nursing Care Coverage July 2015- The BDSRA – the national Batten Disease organization hosted an annual family support conference. Families with their affected children came and received support and information. During this 3 day conference (July 9-11, 2015) children with batten disease were provided with care and medical attention. OPTN will offer this type of care again in BDSRA 2016 at the conference. OPTN  has donated $6,300.00 to the BDSRA toward nursing care at this 2015 conference. See pictures on the side panel of this web site “BDSRA 2015 pictures”- coming soon.
  • International Scientific Workshop 2016- This workshop will be the 3rd annual and is currently being planned by OPTN in collaboration with other family foundations like OPTN in the United States.

On behalf of Nicholas, we thank you for your generous support in helping to fulfill ours and John Tanner’s “Promise to Nicholas” to find a cure for Batten disease. All of these efforts are made possible with your support and tax deductible donation.

 

 

 

7th Annual Fore! Nicholas Golf Tournament and Dinner Saturday June 20, 2015- Stonebridge Country Club- Goffstown NH

We had 72 golfers and 25 additinal people attend the dinner portion of our event and raised $12,000. Which is awesome!!!

Thank you to those who attended, support and volunteered at our 7th Annual Fore! Nicholas Golf Tournament on Saturday June 20, 2015!!. Thank you to our many sponsors: BASC, CMC, Alkemey Partners, Meissner Family, McLaughlin Family Foundation, Spectrum Printing, Williams Family, Bedford Martial Arts Academy, Edward Jones, Bator Family, McDonalds, Ciardelli Fuel-Amherst NH, Hawkins Point Partners, Long Champ Electric, Ponemah Veterinary Hospital, Rothwangl Dental Care, PPL, Blue Beetle of Nantucket- Elizabeth Thompson Hughes, Paquette Family, Brian Haward CPA, Patio Barn, Tom’s Earing Holders-Tom Massimino, Kevin and Joan Gibbons Family.

 

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