Story
As most of you are aware my eldest son Thomas (who turns 11 this year) was born with rare genetic disorder called Cornelia de Lange Syndrome (CDLS). This condition affects about one in 15,000 live births and leads to both physical and learning disabilities.
This year I have been working with the CdLS Foundation to bring an International Conference to the Brighton Metropole in July . Instead of one family travelling half way round the world to visit one doctor, we are hoping to bring 30 or more doctors to to meet up to 100 families. At the same time we are running a series of seminars and conference sessions to bring knowledge and information to medical, health and education professionals.
As a small family support group you can imagine how difficult this is to do. The Doctors are giving their time freely and we are committed to buying them an economy ticket and paying for their hotel where they will give their presentations and do one-to-one consults with families.
So this is where my challenge starts, my plan is to walk 26 miles (from Worthing Pier to Brighton Pier and returning to Worthing Pier) companied by my father-in-law Graham Hussey and fellow walker Neil Terry, on the 13 June this year. Our aim is to raise at least £1500 to sponsor one or more Doctors attending the conference.
To ensure this event is a success I need your sponsorship!
Please give what you can to this worthy cause.
Many Thanks, Jim May
Vice Chairman of the CdLS Foundation UK and Ireland