The BDSRA is a volunteer based organisation with common goals to provide information and support to those affected by Batten Disease.
Memberships are payable annually and an amount of $25 is all you pay per individual or family unit. This entitles you to all the following support areas:
- An E-List and posting list (for those without access to the internet) are maintained where any news, updated or relevant information that is received by us, will be automatically notified to our members;
- Quarterly newsletters with notices, helpful information, fundraising results and research reports;
- Referrals to other families who may be in a similar stage to you or reside closely. This can be arranged with consents from each party. Special bonds can be formed this way;
- Public awareness and fundraising is not only fun but is important for you to utilise all resources that surround you. We can help you when you are ready to do so;
- Resources and Information available to Families
· Provide families and their communities with extra support such as:
o Newly diagnosed family information pack
o Family meetings – when and where as warranted but usually every 2 years
o Newly Bereaved information
o State-by-state organisations resource guide;
- Who should I contact now? Contacts page of this site;
· Ongoing phone and email contact, not only with the family but their extended family, friends, field specialists and general public.
YOU CAN FIND US NOW ON FACEBOOK