June 9, 2024

Our goal is to raise awareness and funds by advocating for the Batten disease community affected by all CLN types.

Together, We Are Batten Advocates for a Cure. 

About this event: Join us as we celebrate Batten families around the world and raise awareness and funds! The BDSRA Foundation is hosting the 2024 International Batten Disease Awareness Day Virtual 5K on Sunday, June 9th, 2024. You don’t have to participate in the virtual 5K to advocate for Batten disease. This year, we’re providing a variety of activities for you to raise awareness and funds for Batten disease and BDSRA.

Activities: Here’s how you can advocate!

• Now to June 9: Register, create a fundraising page, and order a T-shirt!
  • This is open to individuals of all ages and abilities. Once you register, either as an individual or as part of a team, the focus then shifts to raising funds. Set a personal/team fundraising goal and encourage your family, friends, community, etc. to donate to your fundraisers. BDSRA set a $75,000 goal this year. The proceeds you raise towards that goal will help BDSRA provide compassionate support and advocacy for all types of Batten disease. Watch the tutorial below to get started.
    
    
    
    
  • WE HAVE EXTRA BATTEN AWARENESS DAY T-SHIRTS!
    • The remaining T-shirts are on a first-come-first-serve basis and can be ordered by clicking here. We can't guarantee shirts will be delivered by Sunday, June 9th, but we will ship orders as soon as they are received!
      
      
      Official 2024 International Batten Disease Awareness Day T-Shirt
      
      

• May 9 to June 9: Tell us who you’re advocating for
  • We’d love to learn more about your loved one(s) with Batten and your family’s journey. Download and print off our virtual 5K racing bib by clicking here and write who you're dedicating your Batten advocacy to. Take a photo or video of yourself holding the bib and share it on social media using the hashtag #BattenDay2024, and tag BDSRA to have your post shared! You don’t need to participate in the virtual 5K to do this activity. 
• June 1 to June 9: Contact your legislators by sending them a pre-written letter through our advocacy module. The pre-written letter urges your congressional representatives to drive legislative efforts prioritizing Newborn Screening for CLN2 Batten disease and to petition the FDA to adopt a more agile approval process for rare and ultra-rare disease treatments.

  Advocate

  
  
• June 1 to June 9: Share our daily Batten facts!
• • A daily fact about Batten disease and rare disease will be posted on our social media channels (Facebook, Instagram, X, and LinkedIn) starting on June 1st through June 9th. Please share them to build awareness!

• June 1 to June 9: Tell your story
  • Share about your family’s journey through Batten disease using a template provided by BDSRA.
  • Tell us where the path has taken your family. Copy, paste, and answer the prompts below to advocate for Batten disease. Answer the prompts by making a new post and tagging us, and using the hashtag #BattenDay2024, or post your answers in the comments. Feel free to share a picture if you wish!
    • Name of Family:
    • Name of affected child/children:
    • CLN type:
    • Where has the path with Batten disease taken you?:

• June 9 (or anytime before or after): Create your virtual 5K!
  • What exactly IS a Virtual 5K? It is just like any other 5K, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you choose where, with whom, and even how you want to complete the 5K. This 5K can be completed any time leading up to June 9th or after. It can even be done in increments; keep track of your distance until you hit the 5K. Whenever you choose to complete your virtual 5K, we ask participants to post pictures of themselves on their 5K route. Tag BDSRA in your posts and use the hashtag #BattenDay2024 so we can keep up with all the fun.