by heather | May 17, 2024 | Uncategorized
8th Meeting – Translational Research Conference for the Management of NCLs- November 21 & 22, 2024 Join us as we gather families, scientists, and industry experts to discuss gaps, lessons learned, and emerging therapeutic approaches in NCL Location...
by siteadmin | Jan 18, 2024 | Uncategorized
Status of the 2024 Egg Hunt The OPTN Egg Hunt Fundraiser has been a beautiful journey for our family, and we will cherish these memories for the rest of our lives. This event has blossomed over the years, becoming bigger and better each year. Unfortunately, all good...
by siteadmin | Jan 18, 2024 | Uncategorized
This is the 9th year of sending out holiday care packages to children in the US with Batten Disease. We sent 62 children, which is the most we have ever! They were mailed November 29th to arrive before the December holiday. These packages are filled with donated new...
by siteadmin | Aug 8, 2023 | Uncategorized
Hello! Welcome to the 2023 – 9th Nicholas Giving Tree Project- Holiday Care Packages for Children with Batten Disease! This is our 9th year sending our holiday care packages to children with Batten Disease. We will be sending them to 61 children all over the...
by siteadmin | Aug 8, 2023 | Uncategorized
A well-loved community event in Bedford, New Hampshire raised $20,000 for the fight against Batten disease. This year was Our Promise to Nicholas Foundation’s fourteenth annual spring Egg Hunt. The Indoor Maze to the Egg Hunt was Saturday April 8, at the NH Sportsplex...
by siteadmin | Aug 8, 2023 | Uncategorized
This is our 9th year volunteering/working in the affected kids care room at the BDSRA Summer Family Conference. This year it was in Denton Texas. Thank you for the support from Mary Payton Miracle Foundation, Fore Batten Foundation, and many other family foundations...
by siteadmin | Aug 8, 2023 | Uncategorized
Our Promise to Nicholas Foundation funds nursing care support for the children with batten disease attending this conference. In this childcare room for children with Batten Disease we do lots of arts and crafts, play games, play with toys, sing, dance and give lots...
by siteadmin | Aug 8, 2023 | Uncategorized
This is our 9th year sending our holiday care packages to children with Batten Disease.We sent them to over 50 children all over the United States. We know these packages give the families a small amount of joy during a holiday that can be stressful caring for their...
by siteadmin | Aug 8, 2023 | Uncategorized
The Indoor Maze to the Egg Hunt was Saturday April 8, at the NH Sportsplex in Bedford New Hampshire. The egg hunt events began in 2009 as the first fundraiser for Our Promise to Nicholas Foundation. This charity was established when Bedford parents Heather and Chris...
