There are less than a handful of sufferers in Ireland, with only 750-1,000 sufferers worldwide.
To date Late Infantile Batten Disease has always been fatal, and these trials are taking place to attempt to devise a cure. The Cornell trials have been a success so far.
Tony told the Irish Voice about twins from England who were both Batten sufferers. The little girl made the trial (the parents could only afford to send one child). She is still alive. Her twin brother died.
The charity’s website is www.beeforbattens.org.
Checks may also be sent to the Saoirse Foundation, the Kerry Hall, 305 McLean Avenue, Yonkers, New York, 10705.
Contact April Drew at firstname.lastname@example.org or 212-684-3366, ext. 116 with fundraising ideas.