How would you describe your Batten disease journey in one word?

Follow these steps:

  1. Click the button below to download and print out the sheet above.
  2. Write down your word.
  3. Send an email to BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org detailing why you chose the word you wrote down.
  4. You can either hold up the sheet and record a video of yourself explaining why you chose the word you wrote or write about it in the email.
  5. Whether you choose to write about it or record a video, please take a picture of yourself holding up the sheet and attach it to the email.

This content will be highlighted by BDSRA on its social media channels. BDSRA will notify when your submissoon will be posted. The BDSRA Foundation is committed to supporting and advocating for patients and families of all CLN types to raise awareness and give this community a platform to share their stories.

Sharing your story allows BDSRA to help raise awareness for all CLN types and elevate our three pillars — Support, Research, and Advocacy.

Please contact BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org with any questions.

Shared your story with local media? Let us know! Email Patrick and we will share.