May 9, 2003- May 9, 2014
Rest in Peace our son we miss you so much.
CLICK HERE TO READ OUR 2015 Our Promise to Nicholas Foundation Newsletter:
2015 Happy Holidays Thank you for your support!
Here is a picture of our younger son William (age 9)- he does not have Batten Disease
and Nicholas Service Dog Shane.
We would like to thank you, our sponsors. We have raised over $86,000 in 2015. We are excited to finish the year with a great outcome. In eight years we have raised over $750,000. We are so proud of this accomplishment and we know that we can do more in the month and years to come.
EVENTS FOR 2016
8th Annual Easter Egg Hunt Festival , Saturday March 26, 2016 ,8:30AM- 11:00 AM, NH Sportsplex, Bedford NH
4th John Tanner Memorial 5 K Run/Walk – Sunday October 2, 2016 11:00 AM, Wayland MA
Quizinne for a Promise – November 2016
This year we are going to take a small break from the golf tournament and Great Green Balloon Run- These events may be back in the future.
WE HAVE COMMITTED TO FUND 2015/2016
1. $100,000 was awarded in March 2015 to a Natural History and Biorepository Database for Infantile and Late-infantile Batten Disease (Dr. Jonathan Mink- University of Rochester and Dr. Katherine Sims- Harvard University and Massachusetts General Hospital) OPTN sponsorship commitment: $100,000 x 3 years.
2. $25,000 was awarded for proof of concepts for a study by Dr. Michelle Hastings (Rosalind Franklin University School of Medicine and Science, Chicago and Dr. Jill Weimer – Sanford Research Center, South Dakota) Stop Condon Read though and Nonsense Suppression for the Treatment of late infantile and infantile Batten disease- This project focuses on stabilizing the mutated proteins that cause Batten Disease.
3. With the sponsorship of family foundations like OPTN, we are sponsoring $5,000 to the 3rd International Scientific Workshop March 29- March 31, 2016 in Bethesda, Maryland. This is a two day conference in which fosters a discussion by leaders in the field of Batten Disease, as well as evolving fields provide direction in research, creating new ideas, partnership, in a forum that would otherwise be impossible to reproduce. Our last conferences were held in 2012 and 2014.
4. OPTN Sponsored $6,300 for nursing care at the Batten Disease Support Research Association (BDSRA) Annual Conference held in Chicago. Over 40 children with Batten Disease in need of expert medical attention were given care and support during this 3 day conference. OPTN was proud to offer our skills and expertise to these loving children. It was one way that we at OPTN can demonstrate are direct support to the families and children. We were so thankful to be there.
5. The Nicholas Giving Tree 2015 – With the support of many friends of Nicholas, OPTN has fostered the “Giving Tree Project”. Sponsorship was given to 22 families who have children with various types of batten disease all over the US. 40 families sponsor their needs by sending items such as toiletries, over-the-counter medications, clothes and toys. The total donations to the batten community was over $2000.
OPTN in the news…
- OPTN my fight story was featured in a book / web site George Foreman III “Why we fight.” www.everybodyfights.com click on Shop, Click on The book and scroll to fighter profile
- 2016 March OPTN will be featured in NYC Parenting Magazine
- Working on a new updated OPTN Web site!
Notes from Heather:
As I reflect back on the year for OPTN 2015, I do miss Nicholas every day and every second. He is my PASSION and drive to continue. This year I have met many of you who have been our OPTN supporters, donors and sponsors. I have met folks that have shared their life experiences of giving, volunteering and being present to help the world around us. This has spun my world in a positive direction and I am inspired to do my part. OPTN supporters have blossomed into my mentors. I have been surrounded with open arms and the biggest hearts of all. I want my family and I to continue to be part of this gift. OPTN Foundation has a PURPOSE to help cure batten disease. My PROMISE to Nicholas has not changed. Thank you for believing in us to make a difference.
Bless you and your families.
Heather and Chris Dainiak
Our Promise to Nicholas
PS: Many have asked me if we had to return Nicholas’s service dog Shane back to the service dog agency. The answer is NO- Shane is now almost 8 years old. He is ours to keep forever! . I know he misses Nicholas like crazy and he wants to continue to work. He now sleeps on William’s bed every night. With a patch on his vest that says “Nicholas Strong”-He has started working as a Therapy dog at Catholic Medical Center in Manchester NH. He loves his job and the patients love him too.
PPS: Our Promise to Nicholas is on “FaceBook”. It is a private page. Ask to join and you will find more detail updates as the year 2016 unfolds!