The BDSRA staff is constantly in awe of how kind our Batten community is. Kindness does not have to come as a large gesture, nor does it have to cost money. It can be a nice note, comforting words, or a helping hand. The Batten community is full of incredible people who are constantly helping one another. You send sweet messages, answer hundreds of questions online, are welcoming, and generous. We often hear from people outside of our community that we have the most warm and caring families they work with.
To keep us all thinking of and spreading kindness we wanted to highlight a story from our Batten community. We hope to hear from all of you about your experiences.
Our story today features Jody Zorn, a Batten advocate in Manitoba, Canada. Although no one in Jody’s family is affected by Batten disease she cares deeply for all Batten families. In her free time, she runs the Laps 4 Life organization which raises money and awareness for Batten families in Manitoba. You can learn more about Laps 4 Life and their mission here, http://www.laps4life.com/. In addition to helping families with the cost of medical equipment Jody helps families navigate the healthcare system and advocates for them with local officials. Jody also volunteers her time to help BDSRA with education and support services.
This winter Jody found out her friend Sheldon was feeling lonely. Sheldon is 10 and was recently diagnosed with CLN2 Batten disease. As the Batten community knows, diagnosis can feel very isolating. To show Sheldon and his family that they are not alone Jody reached out through Facebook to ask people to send cards to Sheldon. Her request was picked up by the news and shared all over the world, they received over 3000 cards for Sheldon and his family!
Follow the below links to read articles and watch the news clips.
We would love to hear your stories of spreading or receiving kindness. Comment below or tag us in your social media posts!