It is with great sadness that we have to write about the sad passing of Dawn Haywood- Jones.

Dawn along with 3 other people started Alpha-1 Awareness in 2008 in the hope that they could reach out to fellow sufferers and to educate the medical profession on this Rarely known condition. Dawn was widely respected both in the UK and in Europe for her work on promoting awareness of alpha-1 and for trying to get Augmentation Therapy available to all Alphas.

Dawn was always a driving force and this strength came to play when she stepped into the role of Chairman of the Charity in 2015.  In her new role she wanted to drive the charity forward and to continue with its campaign for awareness. Sadly, in 2017 Dawns health struggled with Alpha-1 which meant she could no longer continue in her role as chair and she reluctantly stepped down to, in her words, “let the younger generation” take the reins. This did not stop her from still “steering” the ship when she felt it was needed. Often sending an email to remind us of events or things we needed to do. It was her nature to always be there to help and guide.

We met Dawn in 2009 when our son was diagnosed with Alpha-1. She became a guiding light for us to take us through those dark times. Although at the time the charity had no other parents with Alpha children she still offered much needed support to help us come to terms with his diagnoses. While our interactions were via email at first we were lucky to meet Dawn at an Information day in London. There we also learnt of Alphie Bear. A little bear given to all children attending with a special prayer and heart inside for a long and healthy life. This tradition is honoured still within the charity and Alphie now has become the logo for the children’s club. Something we hope Dawn would be proud of.

Dawn had a true zest for life wanting to live it to the full, often raising a glass or two. She was a shining beacon to many Alphas who struggled in the dark of diagnosis. She has left a lasting legacy both personally and within the charity that will stay within many hearts despite her sad passing. Dawn did not want people to mourn her passing but to Celebrate her life. So here is to Dawn “May we continue Onwards and Upwards and we hope now you can breathe easy”