Why do we need Awareness?
- Whilst every family's ultimate wish is for a therapy that might reverse the progression of Batten Disease and restore their child's normal brain function, in the year 2013, this is merely just a dream. Yet if we are somehow able to be able to just slow the progression of the disease then we can take steps to cure this disease and SAVE our children. Battens parents live in HOPE that one day, this can be achieved. Treatment and a Cure depend not only upon the brilliance and perseverance of our dedicated researchers, but also upon the world-wide awareness and availability of research funding.
- Furthermore, a lack of knowledge and assistance prevails in diagnosis, care management and areas such as pain, behavioural challenges and schooling. Every parent and its community endures isolation and often breakdowns in existing relationships.
In addition to fundraising, the BDSRA endeavours to overcome these barriers by reaching the public in various ways:
National Batten Disease Awareness Day, 31st March
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 section eg. Training & Education film, brochures Click here
- Fundraising section eg. Merchandise sales, Events and Activities Click here
For several years, McDonalds Restaurants in every state of Australia, we are making this disease more aware to the public. They would place our Awareness poster on the community board of each restaurant.
Could you organise the display of an A3 size poster in your local businesses, staff boards or community boards? and/or at events to highlight the occurrence of Batten Disease and the Awareness Day. Please contact email@example.com to request the number of posters to be mailed to you.
When a family tells their story, the public is able to gain an insight to Batten Disease via their experiences, highs and lows but most of all by sharing their loved one’s inspirational story. Sharing a personal story can be both intimidating and fulfilling but in turn, one more person learns why this cause exists and what we need to do.
Click here to view the stories that have created awareness to the Australian public. Click here – News Story page
Australian Schools create awareness
Each year in connection with the National Batten Disease Awareness Day, Schools Australia-wide have participated in creating awareness via their newsletters and making Baby Battens bears, small water bottles and/or fun maze pens available to their students to purchase as a keepsake of this Day.
If you would like to participate in this promotion or would like to nominate a school, please contact the Awareness Promoter by contacting firstname.lastname@example.org
“It is the awareness that brings knowledge to the public and assists with early diagnosis”