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...
