Batten Disease (BDSRA official group)

Hello! This Closed Facebook group is an on-line community for immediate family members caring for a child or adult with Batten disease. If you wish to join this group, you must email the BDSRA Family Support Officer Becky Hetteberg at in order to join.
Members of this Closed Facebook group include parents, step-parents, adult siblings, grandparents, aunts and uncles and extended family who are in the role of caregiver to the child or adult with Batten disease. Members of the group must be 18 years old or older.
The primary purpose of the group is to share experiences, support, and insight into the care of those affected by Batten disease. Even though Facebook platforms are relatively open spaces, the people who are part of this group expect it to be a safe place. Content that group members post should be treated with the utmost confidentiality. Posts are reviewed for appropriateness by BDSRA staff. Please do not post information about non-BDSRA fundraisers.
If you are not a parent or caregiver, we respectfully ask that you support our Batten families on our Open Facebook page, which is You may also find more information at our web site, Thank you!