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 with Batten Disease had a great time because of your support most kids were able to receive 1:1, 1:2 or 1:3 (meaning 1 nurse to # of children with Batten Disease) care at the conference depending on their level of needs. We were able to complete a lot of wonderful hand print keep sakes for the families to take home and also had a fun time with the kids. The kids we are taking care of have various types of Batten Disease. Most of the kids are completely blind, have seizures and need full support care to remain safe. Their parents and care takers were able to listen to seminars at the conference, learn about trials open for their child, learn about medications, equipment and also receive support from other families going through the same struggles- while their sick child was in our care. Thank you again for all your support!
Thank you our doctors, scientists and researcher for all you do to help us in the cure of all types of Batten Disease. I consider these folks my celebrities who are working as fast as they are able in their labs- understanding our kids don’t have time on their hands as the disease progresses so quickly. We are thankful for their work. I was lucky enough to see and talk with them at our Batten Disease Family support conference this past weekend July 6-9 in Pittsburg, PA.
