» Past Members of the Board

We want to recognise the people who have served as trustees (and more) over the years. They may have stepped down but we will always remember their contribution and gratefully thank all those that have worked to further our cause.

Andrew Conlon

Andy was a board member from 2006-2021. He served as a general trustee until 2014, when he took on the role of Vice-Chairman. In 2019, he kindly agreed to take on the vacant Treasurer's role. He was the co-ordinator of our annual London Marathon runners.

Andrew Borge

It was during dinner one night in Dubai in December 2007 that Andrew was asked by Alan Peaford if he would get involved with the CdLS Foundation. Since that time, Andrew has involved himself as much as he can in the mission of the Foundation, taking over in 2010 as Treasurer. Andrew stepped down as a trustee, to be Acting Office Administrator until we found a person to take on the role permanently in 2018.

Rachel Davies

Rachel became a Trustee in 2010. She is mother to Ed, who has CdLS. She ran the London Marathon in 2015 to raise monies for CdLS. For Rachel the Foundation is about taking research into the Syndrome forward, learning more about the condition and giving families the opportunity to share and learn from each other. She stepped down in 2018.

Tom O'Neill

Tom has been the longest serving trustee in the history of the Foundation. First elected in 1998, becoming Hon. Sec. along the way, he served until 2018. A remarkable length of service.

Paul Barlow

Paul served as a trustee from 2008 until 2016. He was our organiser for Irish families and events.


Jim May

Jim had been a trustee from 2002 until 2016. He also served as Chairman from 2010 to 2014. His term as Chair steered us through a very challenging period. It is thanks to Jim that the Foundation returned to financial health after the 2009 World Conference

Edwin Rich

Edwin had been active within the Foundation since they first gained charitable status. He served as a trustee from 2014 to 2015.

Frank Gierak

Frank was a trustee from 2006 until 2014. Frank brought the experiences of a CdLS grandparent to add to the board.

Richard Simmonds

Richard was drafted onto the inaugural board in 1997. He took on the role of Treasurer and remained in the post until 2011. He resigned from the board in 2012. Another long serving stalwart of the Foundation, Richard made a significant contribution to our development.