MCADD families belong to what is now, by far, our largest group of families. Since the addition of MCADD to the screening programme in 2010, the number of MCADD families has increased and over time so has the need for a more varied spectrum of support.
In order to ensure that we are providing services that MCADD families really want, we would like to recruit a focus group that represents the diverse range of needs that MCADD families have. Our intention is to consult with the group regularly before planning our yearly calendar of events. If you would like to be a part of our exciting new MCADD focus group, or if you would like further information, then please get in touch with firstname.lastname@example.org
Sharon is the Mum of Dom who has MCADD. Dom was diagnosed as a result of his sister Esmé (pictured left) sadly losing her life to undiagnosed MCADD in 2013 at the age of 17. Esmé was born before MCADD was added to the screening programme which now saves lives every year by diagnosing MCADD at birth. Sharon has worked tirelessly to raise awareness of MCADD and ensure that not only medical professionals in local hospitals and A&E departments understand the importance of acting fast when required, but also helping the general public to understand more about this rare condition. Sharon, along with the rest of Esmé’s family and friends, have raised in excess of £40,000 for Climb.
“Setting up a Galaxy Tribute Fund has been a wonderful way to honour our beloved Esmé. The team at Climb (in particular Rachel Evans our Family Adviser) have been extremely supportive in helping us to use a tragic experience as a way to focus on something positive that we hope will be of benefit to many others. Ignorance of this silent killer makes spreading the word and raising awareness simply vital” – Sharon