Listed below are links to several websites from around the world who strive to create awareness and fund raise in their locations.
To find out more about Batten Disease read on...
The Latest Research
1. Juvenile Drug Trial, USA, using CellCept:
The FDA (Federal Drug Administration) has approved the drug trial for juvenile Batten disease. The group that will be conducting the trial are now applying for
Institutional Review Board (IRB) approval to conduct the trial at the University of Rochester.
Details not yet known are;
(a) the number of children who will be allowed to participate in the trial;
(b) what the parameters for inclusion will be (other than the child must be confirmed by genetic testing to have CLN3;
(c) if open to children outside of USA and Canada.
Although the Australian Chapter has assisted with funding to bring this trial to reality, in this early stage it is doubtful that this trial could be offered to Australian and New Zealand children until the safety aspect and effectiveness of the drug is monitored. In the meantime (whilst the USA trial is progressing), I intend to approach a medical institution to find out the protocol of having the drug prescribed here as I have contacted an organisation in Australia who manufactures the drug so I now know that it is available here. That is one less hurdle !! We'll stay tuned on this.
2. Late Infantile Stem Cell treatments:
You would be aware of the StemCell Inc. research in Stage 2 this year (also only available in the States) and we all will watch closely as to its progress and effectiveness but here is a very interesting link for Late Infantile stem cell treatment in China http://www.unistemcells.com/en/stemcell/20081216204518510.htm
where unlike America's (Stem Cell Inc.) Stem Cell TRIAL treatment, anyone can participate. I believe that the main issue is that there is no protection for the child as to the efficacy of the treatment whilst outside your own country. I am in contact with a American family who is currently in China undergoing the treatment and will keep you informed of their progress.
For more information follow the link to Wikipedia http://en.wikipedia.org/wiki/Batten_disease