The important part here is that we are making amazing progress. In spite of having small amounts of funding we have gone from the identification of the first gene in 1995 to having human trials in 17 years !!!
Not only that, we have several different approaches; much to say that "we don't have all our eggs in one basket". In addition, we have carrier testing available to families and pre-genetic testing with IVF as a result of research.
Also at this time, funding is urgently needed to help maintain and expand the sheep research models of Batten disease as well as support our ongoing research into the underlying impairment to brain cell function and testing of potential therapeutic treatments.
On National Batten Disease Awareness Day, 31st March, many fundraising ventures will be carried out around the nation (refer to our Community Support section). This fundraising and continuous support by families and members of the BDSRA ensures that scientists have enough funds to continue with this very important research.