Who we are
The Batten Disease Association was established in the year 1986 in the United States of America to help provide essential services to patients of the Batten disease. Eleven (11) years later, a branch was established in Australia with the same aim of helping to provide for those children who were suffering from the rare Batten disease. The Batten disease had presented parents and carers with a lot of problems due to the fact that most medical practitioners had no knowledge of it and therefore could not provide the proper support services for children who were suffering from such a disease. It was therefore decided by some parents to form the association in order to find better treatment measures for their children and others who might be suffering from the disease.
What is the vision of the Batten Disease Association?
The vision is to help provide people suffering from the Batten disease with all the support that they and their families need.
What are the values of the Batten Disease Association?
The values of the Association are;
- Respect
- Integrity
- Mutual understanding
What is the mission of the Batten Disease Association?
The mission of the Association is to see to it that a society is created which ensures the proper treatment and provision of equal chances for each and every individual suffering from the Batten’s disease.
The Batten Disease is a disease that is known to cause various kinds of disorders within the body of a victim and it usually starts from the brain then works its way to the other parts of the body. The effects of this disease include the inability of the child concerned to perform basic physical human actions like;
- How to walk
- How to talk properly
- How to eat
These problems are all brought about as a result of the Batten’s disease and as such any child who gets it is presented with a very daunting task of living a normal life. This is why the Batten Disease Association was established so that such children and their carers could be provided with vital services aimed at enhancing their lives and making it possible for them to also have a good shot at life.
What are the services provided by the Batten Disease Association?
The Association provides children suffering from the Batten disease and their families with the following supportive services;
- The provision of a library that is well stocked with all the information concerning the Batten disease
- The provision of an online supportive service which gives members to the chance to find helpful answers to certain questions with regards to a child having the Batten’s disease
- The organisation of a family meeting which helps families of children suffering from the disease to share their experiences and ideas
- The provision of a National Batten Disease Awareness Day aimed at helping to educate the society about the Batten disease
How you can help
- By making a donation
- By volunteering for the Batten Disease Association
- By participating in the events organised by the Association
- By becoming a corporate sponsor
- By fundraising for the Association
- By buying any of the Batten’s merchandise
Offer your support so that children suffering from the Batten disease can also be given the chance to live a normal life.
