What is batten disease? – Bounce4Batten

6 June, 2019 Blog

what is batten disease?

Batten Disease is a rare neurodegenerative genetic condition that is debilitating. Sadly, Batten Disease is fatal, affects mostly children and there is still no known cure. The progression of the disease is rapid and children lose the ability to walk, talk, see and eat.

One of our Tiny Toes Ballet ballerinas, Emily is affected by this debilitating disease.
In 2018, SBS came out and filmed Emily dancing in our ballet and jazz class to help create awareness of Batten disease. We need to raise funds to help find a cure.

Bounces, leaps and star jumps will start to fill our social media feeds and all for a good cause. As we approach International Batten Disease Awareness Day on 9 June everyone is invited to spread some awareness and joy and Bounce4Batten.

It couldn’t be easier, so get your kids, pets and friends involved and get behind Bounce4Batten. Bounce a ball, bounce in a puddle or bounce over bumps in your wheelchair. It’s all about the feel-good factor of giving and having some fun. It’s time to #Bounce4Batten.

why Bounce4Batten?

Bouncing is something universal that all kids can do. Bouncing creates positive energy, it’s lively, confident, vigorous and healthy. The #Bounce4Batten campaign is a lot of fun and simultaneously highlights the serious nature of Batten Disease. A devastating condition that strips children of all their acquired abilities. Affected children will no longer be able to enjoy a typical childhood; to run, jump, sing and play.

Without the collective awareness, discussion and lobbying, we know it won’t be possible to advocate for treatments for Batten Disease and raise funds for research to help find a cure.

how can I make a difference?

To make a difference all you have to do is bounce a bit (or a lot because you probably won’t want to stop) and post a photo on social media. Not only does this get the message out and raise awareness for Batten disease but it also spreads joy.

show your support in just 4 steps

1. START BOUNCING! It’s a lot of fun!
2. SNAP A PHOTO of someone or something bouncing.
3. SPREAD THE WORD – Share your bouncing photo on social media with #Bounce4Batten #BattenDay2019 and encourage your friends, family and followers to do the same.
4. FOLLOW @Bounce4Batten and @bdsraaustralia.org and support our ongoing awareness campaigns and our efforts to advocate for treatments for Batten Disease and raise funds for research.

Any donations that flow on from this awareness are directed to the national registered charity Batten Disease Support and Research Association (BDSRA) to help support research for a cure.

Donate now to the National Batten Disease Charity - BDSRA

From Emily’s family and all of us here at Tiny Toes Ballet, we thank you for your support.

obligation free trial

If you have a two to seven-year-old who loves to twirl and leap, Tiny Toes Ballet might be the right fit for your child. Why not come along for a trial lesson.

Call us on (02) 9620 9620 for an obligation-free trial class.

We have classes located at Baulkham Hills, Beaumont Hills, Beecroft, Castle Hill, Chatswood, Cherrybrook, Concord, Crows Nest, Five Dock, Hornsby, Kellyville, Kings Langley, Marsden Park, Rouse Hill, The Ponds, Wentworth Point and Winston Hills.