Raising Awareness

This weekend, June 6 and 7, are Batten Awareness Days. I am writing here to raise awareness about Batten Disease because I know a beautiful little girl who has it. Celia and her family attend my church, and Celia's Aunt Vicky also used to work with me.

What is Batten Disease? From the website of the Batten Disease Support and Research Association:

Batten Disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten Disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs). Although Batten Disease is usually regarded as the juvenile form of NCL, it has now become the term to encompass all forms of NCL. The forms of NCL are classified by age of onset have the same basic cause, progression and outcome but are all genetically different. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate, and it is presently always fatal. Batten Disease is not contagious or, at this time, preventable.

If you want to read about Celia's story, you can read this entry from her blog.

What can you do about Batten Disease?

You can support Batten Disease research.

1. Visit the BDSRA web site to make a donation.

2. Register your Kroger Plus Card for BDSRA. Here's how:

Just sign in to or create an account at www.krogercommunityrewards.com for your Plus card and do the following: Click on Edit Kroger Community Rewards information and input your Kroger Plus Number located on the back of your card. Enter the new NPO (non-profit organization) code for BDSRA which is 83592 and click on Confirm. To verify you are enrolled correctly, you will see our organization's name on the right side of your information page.

3. Visit GoodSearch to learn how a few mouse clicks can earn extra money for BDSRA.

You can support Celia.

1. Visit the Care for Celia web page to make a donation on behalf of Celia.

2. Keep Celia and her family in your prayers.

3. Tell others about Batten Disease and ask them to pray for Celia as well.

Thanks,
Heather