Batten Disease Support and Research Association

An international support and research networking organisation for families of children or young adults with this inherited neurological degenerative disorder, know as Batten Disease.

The BDSRA funds research to find a treatment and ultimately a cure for Batten Disease.  No Government funding is provided and we are trying to fundraise to ensure that many worth research areas continue to be investigated by the scientists.   The BDSRA annually funds these studies and and in some areas, clinical trials are nearing (except where some organisations are self-funded).  Currently, we are raising funds to allow this clinical trial for ………….. become a reality

s yet, no specific treatment is known that can halt or reverse the symptoms of Batten disease. However, seizures can be reduced or controlled with anti-convulsant drugs, and other medical problems can be treated appropriately as they arise. At the same time, physical and occupational therapy can help patients retain function as long as possible.

Some reports have described a slowing of the disease in children with Batten disease who were treated with vitamin supplements. Attention is being focussed on controlling some of the cell chemistry through dietary trials including fish oils and anti-oxidants. There are other studies also being carried out in the USA, UK, Australia and the Netherlands. However, so far these treatments have not prevented the final outcome of the disease.

Support and understanding can help patients and families cope with the profound disability and loss of cognitive function caused by NCLs. Often, support groups enable affected children, adults, and families to share common concerns and experiences.

Meanwhile, scientists pursue medical research that could someday (hopefully in the near future), yield an effective treatment. More government and public support are needed to provide the resources to help them.