An additional 125 families who were on a “pending” list who have a CdLS child, have received information but have not yet completed a release form.

This is an increase of 22 families – or nearly 7 percent – from the previous year.

We continue to believe that our membership represents less than a half of CdLS families in the UK.

It remains the Trustees goal to increase awareness so that families who are not in touch with the Foundation remain so through their own choice and not just because they didn’t know of our existence, or that the CdLS person is incorrectly diagnosed.

There are additionally 187 medical and other professionals (outside of the CdLS Foundation Inc, Link list) who receive information.

The Foundation also sends information and newsletters on a regular basis to 116 others in the UK who include additional relatives, carers or supporters – this number has increased by over 10% on the year.