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
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
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