The inspiration for this charity came whilst sitting on a picnic table in the grounds of Bowood House. We were having such a fun day – the chatter over the picnic was about amazing achievements – grade 8 musicians, singers, rugby players and the silly stories about dealing with hearing aids, blood tests and some of the horrors we had all been through but could laugh about now. The chatter, laughs and jokes about what is ‘normal’ for us was such an uplifting experience to share, we vowed to get others together to do the same.
From this, the first National Alport Information Day was born. It was the result of a small group of families working in partnership with the Rare Diseases Working Group for Alport Syndrome, whom we would like to thank for their support and encouragement throughout: Professor Colin Baigent, Deborah Fielding, Professor Frances Flinter, Susie Gear, Michael Nation, Professor Neil Turner.
The success of the first National Alport Information Day and the positive feedback from those who attended inspired us to take things to the next step, and to fill the gaps that we felt existed –the need for clearer, more straightforward information, the need to raise the profile of Alport Syndrome and drive the research agenda, the need for better diagnosis and treatment, the need to reduce people’s sense of isolation, the need to be able to share, to laugh and above all to lead our ‘normal’ lives…
That’s why alport uk is here. We know we don’t have all the answers and that there is so much more that needs to be done. alport uk is very much a partnership – between individuals, families, the scientific community and the many organisations out there working towards a common goal.
We look forward to working together with you.
Susie Gear and Jules Skelding
co-founders alport uk
alport uk is a registered charity, number 1154774. It was set up by a group of volunteers – individuals and families living with Alport Syndrome: Colin Baigent, Katie Fry, Steve Fry, Susie Gear, Catherine Kent, Julie Kiddie, Thomas Kiddie, Clare Norrie, Jules Skelding, Oliver Skelding, Richard Stanton, Julie Tippett, George Walker.
alport uk works in partnership with the Rare Diseases (UK) Working Group for Alport Syndrome. For more information on rare diseases: www.raredisease.org.uk.