The last few months have been a whirlwind for the Murfield family, a common feeling shared amongst Batten families everywhere after receiving the diagnosis.
Kevin and Heather Murfield’s two-year-old daughter, Sloan, was diagnosed with CLN1 Batten disease in January. Since then, the family has shared the beginning of their Batten journey with KELOLAND TV, and their local community in South Dakota has rallied around them.
Most recently, the family was granted a wish by Make-A-Wish South Dakota & Montana, which was a trip to Florida that included a visit to Disney World.
The 3rd Annual Braving Batten Fun Run and Family Picnic Day will take place on Saturday, June 10th – the day after International Batten Disease Awareness Day.
This event, hosted by the Beedle family, aims to raise awareness for Batten disease and funds for BDSRA Foundation.
FOX 32 Chicago produced a story about this event, which features interviews with parents Adam and Amanda alongside their daughters, Annabelle and Abigail, who both have CLN2 Batten disease, as well as BDSRA Foundation President & CEO Amy Fenton Parker.
Have you shared your story with local media? Let us know! Email BDSRA Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org and we will share!
BDSRA Foundation is committed to supporting and advocating for those affected by Batten disease to raise awareness and give the community a platform to share their stories.
Sharing your story allows BDSRA to help raise awareness for Batten disease and advocate for improvements and developments for our three pillars — Support, Research, and Advocacy.
