Egg Hunt Festival- On Saturday March 31, 2018, OPTN hosted their tenth Egg Hunt Fundraiser. It drew in more than 1,100 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford, NH. Over 10,000 candy filled colored eggs covered an entire indoors sports field. Kids enjoyed this festive

Egg Hunt Festival- On Saturday April 15, OPTN hosted their ninth Egg Hunt Fundraiser. It drew in more than 1,100 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford, NH. Over 10,000 candy filled colored eggs covered an entire indoors sports field. Kids enjoyed this festive morning

John Tanner Pumpkin Shuffle 5 K Run/Walk- Saturday October 14, 2017, Russell’s Garden Center, Wayland, Massachusetts -This was OPTN’s 5th year hosting this run in a memory of John and his dedication to Nicholas and OPTN. This year we were honored to have Erika Tarantal, reporter at WCVB Channel 5

2017 Nicholas Giving Tree-  December 11, 2017- Over 40 families located in New England and though out the US donated items and various gift cards for our annual Nicholas Giving Tree holiday care packages. These packages  were sent to 28 families, throughout the US, with children suffering from various types of Batten disease. While it does not cure the disease,

2017 Scientific Conference: 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 leaders, researchers, and scientist throughout the world came together to

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 the 2017 BDSRA Family

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 family conference. The kids

  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