The Australian Chapter of BDSRA
An Epic motor-cycle ride for Battens Saturday October 29th 2016 Cheer Alanna on, as she departs on her motor-cycle around the Australia.  16 years later, Alanna is departing from the 2016 Battens Family Meeting to re-visit the, sometimes strenuous, roads of Oz.  5 weeks of riding a Harley Davidson Blackline northbound and anti-clockwise around this vast country of ours.  She will not have a... Read More
Connections - BDSRA FAmily Conference 2016 Friday October 28th - Monday October 31st Register now! Please download the appropriate registration form, complete and email to manager@battens.org.au Battens Family Registration Form Bereaved Family Registration Form Venue Booked for Camp Breakaway, San Remo NSW www.breakaway.org.au Expenses 1. Accommodation & Food - BDSRA will cover costs of... Read More
National Batten Awareness Day is just around the corner, 31st March. One very simple and fun way you can get on board and raise awareness is to #Bounce4Batten.  In 2016, we hope to spread the joy and bouncing even further and create awareness for all Batten children and their families.So how do you get involved? Participating is as easy as 1-2-3.1. Get bouncing! It's fun. Get out and about and... Read More
Well I did it - I jumped into the Yarra River to raise awareness for Battens! There was a great article in the Melbourne Age on the Sat 10th March 2016.Link is - http://www.theage.com.au/victoria/moomba-monarchs-michelle-payne-and-brother-stevie-set-to-reign-in-parade-that-stops-st-kilda-road-20160310-gnfa9k.htmlRun the interview and I have a little segment, also towards the bottom of the article... Read More
There are many ways that you might support the Batten Disease cause as we come towards the end of our 2015 Anniversary Year. This News issue holds some updated information.... Click here to read the issue.
Perpetual Donation, $10 per month on a continuing basis, which is all tax deductible. For less than a cup of Coffee each week ! And includes Free BDSRA Membership! 4 Easy steps... Read More
Goals of the Project: The Australian Chapter of the worldwide Batten Disease Support and Research Association Inc., was founded in 1995 and is committed to providing support to families affected by Batten Disease and towards research endeavours for a treatment or cure to Batten Disease. The object of this scholarship is to advance research in Australia relating to Batten Disease and to inspire... Read More
Alexandra Grubman and Anthony White of  the Department of Pathology, University of Melbourne have provided an update on current research work: "A greater understanding of how altered cell calcium handling contributes to impaired brain cell function in Batten disease". Click here to read article  
Celebrating 20 Years!   This issue highlights achievements, plans, amazing events and supporters, information sharing and research work updates.  Join us in this milestone – share your thoughts/experiences too. Click here to read issue
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Melbourne Moomba festival has highlighted batten disease in a huge way.... On a big screen on the Yarra River in front of 1000s and 1000s of people, screening an ad twice an hour ALL weekend over the 6th to 9th March.   This ad (short film) played the mission and need at hand:     https://drive.google.com/file/d/0Byh-QHBCtu4RNFJVZk9tNGZ2VlU/view Here are a few photos of the event also.  
Parents are the advocates for sharing our stories to educate the world about Battens.  Here is a special one by the Murchison family via  “Real stories made by real people from all around Australia”, click here:    https://open.abc.net.au/explore/68ky8gc  
“We are pleased about the progress that BioMarin is making in developing a treatment for CLN2 disorder,” said Margie Frazier, Ph.D., Executive Director, Batten Disease Support and Research Association. “This is a notable moment, which holds promise for the children and families who are affected by this disease.” Read More here:  http://www.streetinsider.com/Corporate+News/BioMarin+(BMRN)+Says+... Read More
Lisa and Brett Archer of NZ say the breakthrough in research into Batten Disease is too late for this six-year-old daughter Katie, but they welcome the chance for scientists to move on to human trials..... Read Story here:    http://www.stuff.co.nz/science/63423984/woolly-thinking-a-real-lifesaver
This year has held many challenges, positive connections, inspiring acts and memorable moments.  This issue is dedicated to the many who supported our charity in these past 6 months.  We will remember at Christmas time, our loved ones who have passed  but always with us and in our hearts.            Click here to read issue
Battens in Australia had a pro-active period since our last issue - involving the National Awareness Day on 31st March, the Royals visit which included two of our families in a special meeting and an ABC TV program starring Pauline of WA and her unique garden.   In coming issues we will share more about these and other special events.                         Click here to read this issue
ABC Gardening Australia highlights Pauline's garden in Memory of Brodie and Amanda who both lost their battle with Batten Disease:29 March   @ 6.30 pm on channel 2 and a rerun on Sunday @ 1pm on the 30 March.     View story here:  http://www.abc.net.au/gardening/stories/s3970384.htm   This story on ABC television yesterday is indicative of the love and courage that surrounds persons with Batten... Read More
    Last wish of a brave little girl: All Mia wants is to meet a 'real princess' when the Duchess of Cambridge visits Sydney ·         Mia Murchison, who has rare Batten disease, has a new 'princess dress' ·         Mia, 4, to wear dress to meet 'real princess' the Duchess of Cambridge ·         Mia's parents say royal visit to Australia will shine light on sick children ·         Father hopes... Read More
This National Day allows communities, members and friends to unite in fundraising and raising awareness by reaching out to the public.  This day nominated by the Australian Chapter, incorporates many events and activities which can be found at the Fundraising & Events pages or by contacting the Awareness Promoter at the Contacts Page.  Other valuable sources of awareness are: Resources... Read More
The BDSRA has had a change of face with a new logo.  As most of our literature was newly printed last year, you may see the ’old’ and the ’new’ in 2014.   Please get behind the National Batten Disease Awareness Day on 31st March with plenty of ideas in this issue of how you can help.  Just one passionate deed will inspire a flow of others—like an old saying “if you have two pennies, give one away... Read More
Many charities are feeling the affects of a tightening monetary arena as many worthy non-government causes compete for support. Again, 2013 fortunately has brought incredible people to-wards this cause who tirelessly fundraise or advocate for Battens, inspired by each of the families this charity represents. We can only hope that this good fortune continues in 2014 so that we may reach our... Read More