by siteadmin | Aug 7, 2023 | Uncategorized
Thank you to our sponsors for this race. Congress Asset Management of Boston, Superior Plumbing of MA, Russell’s Garden Center, Paul and MaryAnn McLaughlin Family Foundation, Merrifield Garden and Design, Castlemeghan Concepts, Tuna Landscaping, Stop and Shop of...
by siteadmin | Aug 7, 2023 | Uncategorized
BDSRA Batten Disease Family Support Conference 2018 Nashville Tennessee. Thank you to our donors, sponsors, volunteers at our events, OPTN supporters, volunteers at the BDSRA in the affected kids room, our friends and our family who supported us to make this affected...
by siteadmin | Aug 7, 2023 | Uncategorized
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...
by siteadmin | Aug 7, 2023 | Uncategorized
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....
by siteadmin | Aug 7, 2023 | Uncategorized
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...
by siteadmin | Aug 7, 2023 | Uncategorized
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,...
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...
