by siteadmin | Aug 7, 2023 | Uncategorized
Batten Disease Scientific Conference for November 29 and 30th, 2017 Bethesda, Maryland. OPTN, along with the support of other family foundations, BDSRA, Beyond Batten Disease Foundation and a several pharmaceutical companies funded the 4th scientific workshop. 57...
by siteadmin | Aug 7, 2023 | Uncategorized
Here are a few photo’s I wanted to highlight and let you know I had the opportunity to talk with a few of my Batten Disease scientists celebrities! Here in blue is Dr. Jonathan Mink and his crew from the University of Rochester, NY. They met with many families at...
by siteadmin | Aug 7, 2023 | Uncategorized
BDSRA Family Support Conference July 6-9, 2017. Thank you to Our Promise to Nicholas donors, sponsors and volunteers for your support at our events over the year. Part of the money we raised at our events goes toward this nursing care at the summer Batten Disease...
by siteadmin | Aug 7, 2023 | Uncategorized
Today this photo came up on my FB page to post. I have a love + hate for this photo. When I remember the time it was taken. There was the sting of Nicholas’ rapid decline in his health. Today there is not a day that goes by that I would love to wrap my arms around my...
by siteadmin | Aug 7, 2023 | Uncategorized
Happy New Year! 9th Annual Easter Egg Hunt Festival Saturday April 15, 2017 NH Sportsplex – 68 Technology Drive, Bedford NH 8:30AM -12:00PM For Tickets and Sponsorship please go to the button on this web site that says Donate via QGiv, Then click on EVENTS Tickets on...
by siteadmin | Aug 7, 2023 | Uncategorized
Please enjoy our newest Holiday Letter! ...
by siteadmin | Aug 7, 2023 | Uncategorized
Thank you to our sponsors, donors and volunteers. You make this happen for Our Promise to Nicholas! $41,000 Raised for Batten Disease, Researchers Gather in Bethesda Maryland. Easter was in full swing as the Our Promise to Nicholas Foundation’s (OPTN) 8th Annual...
by siteadmin | Aug 7, 2023 | Uncategorized
Our Promise to Nicholas in the News: 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 the fighter profile Rest in Peace to our Sweet Boy Nicholas Robert...
by siteadmin | Aug 7, 2023 | Uncategorized
Nicholas Robert Dainiak May 9, 2003- May 9, 2014 Rest in Peace our son we miss you so much. 2015 Happy Holidays Thank you for your support! 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...
by siteadmin | Aug 7, 2023 | Uncategorized
This was our 3rd year hosting the John Tanner Memorial 5 K Run/Walk in Way-land MA. John Tanner an elite athlete and also Nicolas’s marathon runner. This run is dedicated to John who passed away unexpectedly while running the NYC ½ marathon for Nicholas in 2013. This...
