The BDFA is absolutely delighted to announce that through the incredible hard work of families, the target for the compassionate use programme at Great Ormond Street (GOSH) has been not just met but exceeded.

The total amount raised is £212,749.51 and the estimated cost is £170,000 for eight children over 18 months. Surplus funds will fund further places (if possible) or be used research into Batten disease.

The fundraising has been phenomenal and the response astounding.

You are all amazing, here are a few examples of some of the fundraising events that have taken place.

We want to say a huge thank you to absolutely everyone who has fundraised, everyone who has given to make this such a successful campaign. Families have worked tirelessly to raise these funds even though it has not been guaranteed that their child will get a place at this time. They have come together for the greater good and we have great admiration for them.

There are over 200 names and campaigns listed here and isn’t completely exhaustive: