Batten Awareness Weekend: How You Can Make a Difference

May 20, 2014

Batten Awareness Weekend is June 7th and 8th, 2014. How will you get connected? Visit for more information on how you can connect with your community and spread the word about Batten Awareness. How can you spread awareness? Check out the following tips:

  •    Update your Facebook status to encourage your FB community to learn about Batten disease
  •    Increase visitors to the website by adding the website link to your email account signature, which encourages others to see and view the link
  •    Post your story or your message on Facebook and ask others to share your post.  Have others visit the BDSRA facebook page and “like” our posts
  •    Thank someone who has supported you
  •    Organize an awareness display at your local community center, hospital, or neighborhood
  •    Host an event at your library and share information and answer questions
  •    Create some artwork to observe the weekend and share it with BDSRA on Facebook
  •    Contact your state representative or member of Congress and tell them why research for rare disease is important
  •    Have a neighborhood potluck and ask everyone to sign a poster or photo for BAW
  •    Get your family pets in on the action and design some wearable BAW outfits
  •    Get ready for summer and decorate some flip flops or T-shirts with BAW colors
  •    Connect with 10 people – in person, on the phone, by email – and ask each for a $10 donation to BDSRA and ask them to connect with 10 others to do the same
  •    Write a letter to the editor of your community newspaper explaining why support and research for Batten disease is important
  •    Light a candle, release a balloon, plant a tree, to remember and honor those who face Batten disease

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