Saturday, June 6, 2009

Batten Disease Awareness Day

Yesterday, today and tomorrow are Batten Disease Awareness Days. We would appreciate your help in getting the word out. Post on your blogs and tell your friends on Facebook.

Batten Disease is the culprit behind what has stripped Emma of everything she has ever enjoyed. It is a neurodegenerative disorder that leads to physical and mental impairment, blindness, and currently has no cure. Children afflicted with the infantile form of the disease, which Emma has, usually don't live much past kindergarten. They are missing an important enzyme, one that cleans out the waste in the brain naturally created by cells.

There are a couple of other ways you can help bring awareness about Batten Disease:

1. Tell someone about Emma or her friend Celia , and visit the BDSRA website to learn more and find ideas.

2. Use Goodsearch instead of Google for your search engine and choose BDSRA as your charity.

Thank you all the love and support you have shown our family since Emma's diagnosis almost a year ago. As rough as the year has been, it would have been a lot worse without you. We appreciate you more than you'll ever know.


  1. Your sweet Emma is such a little doll baby and I pray for her daily. I will do all I can to help spread awareness for her! God bless and keep you, always... (((HUGS)))

  2. My niece, Sabrina, passed away Monday morning from Batten Disease. She was 11 years old. Peace be with you.


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