I was diagnosed with Alström at the age of 39, 11 years ago. My diagnosis took 3 - 4 years to reach a conclusion at which point I was thankfully referred to a new consultant, Tarik Hiwot, with further tests and an invitation to attend a clinic in Torbay, with Dr Richard Paisey. Here I was welcomed into the Alström family.
I was invited to become a Trustee in 2010, which followed me becoming Vice Chair in 2012, then Treasurer and most recently Chair. I work closely with the CEO, Ann Chivers on a daily basis.
I have been married to Ruth for 27 years, we have 2 children, Samuel, 22 and Rebecca 15. I am passionate to help other families, and ASUK and the work I do on the Board is my lifeline.
I have the time to devote to my role, and I'm confident the decisions I make, or play a part in, are for the good of the charity, and for those affected by Alström, both as patients, and families, whilst also considering the financial viability of the organisation. I am extremely passionate that family support is at the core of our charity's’ aims, but I am also aware that research and clinical trials could be the future, in both raising awareness of this rare disease, along with the possibility of drugs/treatment that could improve quality of life.
My work has always been about giving back, having been welcomed so warmly into the Alström family.