Raising awareness for Cystic Fibrosis families - Wear Yellow Day 22nd June

Cystic fibrosis is a rare inherited progressive condition, caused by a faulty gene which is carried by one in twenty-five of us. For over thirty years, a small group of parents, relatives and friends have met nearly every month, to support the aims of the national charity. Some of us are now in our seventies and eighties, but we're still active , and do what we can, when we can. Thanks to the Pfizer Havant Community Fund , we're able to raise awareness, particularly in June, when we have Cystic Fibrosis Week, including Wear Yellow Day, on 22 June. The fund has enabled us to 'grow' the event, with help from the Emirates Spinnaker Tower which has lit up yellow for us in the past few years. Last year we received tremendous support from the Mayor of Havant, the local libraries, and from people in the borough, who organised events. Our thanks to them all. Recently there have been Christmas fairs, a jumble sale, and other events where we help out by visiting, buying, and/or publicizing.

This year, a community petition, led by mothers Gemma Weir and Michelle Frank, resulted in a debate in parliament about access to modern precision medications - which are invariably effective but expensive - an issue for us all in this new era of medicine.

Havant and the surrounding area was particularly supportive - perhaps because we've been active for over fifty years. There are two or more Cystic Fibrosis charities in the area: a large clinic at Queen Alexandra Hospital, research at the university, and brilliant local newspapers.

We are grateful to our MP, Alan Mak for supporting us. This year, we'll hopefully display more banners, and ask people to wear something yellow, to show support for over 10,000 people in UK who live with Cystic Fibrosis, and its unrelenting demand for daily treatment. Sue Kruk, who is secretary of the branch, will take part in the May Days Arts Trail, on Hayling Island on the weekend of 12-13th May. She sells her cards and prints in aid of the Trust, and will have some free postcards for people to send or put in their windows. The first design shows a yellow rose, and the date, as ' sixty five roses' have become symbolic of Cystic Fibrosis charities across the world. Further information can be found at: www.cysticfibrosis.org.uk or www.facebook.com/CFPortsmouth

The date for your diary is 22nd  June Please!

Posted on Tue, 17/04/2018 - 11:53