May 14, 2017
Every birthday is a milestone for those born with the life limiting genetic condition Cystic Fibrosis (CF). In 1959 a child was unlikely to make it to it’s 1st birthday. Today, managed well, 50% will make it to their 40th birthday. A huge improvement but much work remains to be done for the 10800 sufferers in the UK and Channel Islands.
Last year the Cystic Fibrosis Trust invested over £3 million into medical research, not just to find a cure but also to deliver more targeted treatments as the Trust strives to improve and transform the day to day lives of sufferers and their families.
On the 24th May, beginning at 18.00 at Les Cotils, CF Guernsey and the CF Trust are holding the first ever Channel Island CF Supporter and Family Meeting. Guest speaker Dr Keith Brownlee “Director of Impact” for the CF Trust will be talking to us about his role leading the organisation, maximising the impact of health services for those suffering from CF, enhancing the partnership between CF clinicians and health professionals whilst striving to put people with CF and their families at the heart of everything they do.
Find out more at this link http://snt1.net/viewInBrowser.aspx?x=FHR2DIUO&i=2SVY0QW0&c=102478&e=mp.read%40cwgsy.net&l=1
There will be the opportunity for questions covering a wide range of local topics whether they be medical, social or educational issues. Those in attendance include;
Dr James Murray, Head of Profession for Psychology, States of Guernsey Children & Family Services.
Deputy Sarah Hansmann Rouxel, Member of the Committee for Environment & Infrastructure and States “Champion for Disabled People”.
Deputy Emilie Yerby, Member of the Committee for Health & Social Care and Member of the Committee for Employment and Social Security.
Mr Mark DeGaris, Chief Secretary, Office of the Committee for Health & Social Care
Miss Charlie Cox, Childrens Service Manager http://thehub.gg
A representative of the Medical Specialist Group.
At least one representative of the Guernsey Therapy Group, the organisation responsible for providing physiotherapy services to those with CF.
Mr Nick Hynes, Director of Learning, Performance & Intervention at Education Services.
Serena Wilson, CF Trust Community Development & Fundraising Manager for the West
We look forward to seeing you there.