Our ability to facilitate a support network for patients and families and to raise the profile of Alport Syndrome relies entirely on voluntary support and particularly from people living with Alport Syndrome helping others within the community.
With there being so few of us around, it can mean that you may not have met anyone with Alport Syndrome before and so may be a bit nervous about even discussing it. We quite understand as most of us felt like that in the beginning. As and when you feel it is right, please do get in touch.
There are many ways you can get involved and support alport uk. Here are a few ideas – if you have others, we would love to hear from you.
fundraise for us
Do a sponsored event, form a community fundraising group, fundraise at school, or in the workplace. Useful materials:
volunteer for us
We have opportunities for volunteers connecting up with people living with Alport Syndrome who are keen to connect with others in the community, and welcome help with administration, and organising and running events and family days. If you have particular skills to offer, we would love to hear from you. Please email us at firstname.lastname@example.org.
Please consider us as your charity partner. Ask your employees to sign up for payroll giving, sponsor an event or project or nominate us as your charity of the year.
fundraiser of the month
For the month of October Ruth Radanovic ran the Rochdale Half Marathon and raised over £700.
For the month of September Nicola Hayley ran the Leeds Half Marathon in 2 hours 50 and raised £45 and wants to do it again for Alport UK next year.
For the month of August its shared between Dan Long who raised over £200 with an online driving race.
And Sandra Jones who walked up Snowdon in awful weather but succeeded and raised £40.
For the month of July Archie Walker and a group of school friends (James Quillen, Gordon Piedra, Sam Russel and Harry Moross) decided to swim the English Channel and raise money for Alport UK – well they did it and raised a staggering £17,000.
For the month of June Alport UK held an open garden and raised over £700 selling tea, coffee and delicious homemade cakes. They also held a scavenger hunt for the children – here are two great drawings we had.
For the month of May Daniel Vickerstaff ran the Great Manchester 10K Run and raised over £240.
For the month of April Sandra Jones and a friend took on her second Kilt Walk in Glasgow and raised over £600.
For the month of November we had a lovely coffee and cake afternoon in Nottingham hosted by two of our warriors Jeanette and Alfie Bailey. They have introduced some fab new Alport UK cake toppers.
Fundraiser of the month for September is Lauren Payne and family who asked us to produce some alport pin badges for their wedding favours.
Fundraisers of the month for August are Sophie Humphries, Robert Barton and all their friends who raised over £1,100 by walking up Mount Snowdon in North Wales.
Fundraiser of the month for July is Claire Charrington who raised £1,000 with a 10K run with friends.
Fundraiser of the month for April is Sandra Jones who raised £540 with a Kilt walk in Scotland.
Fundraiser of the month for March – goes to another Facebook warrior Kirsty Jepson and her family who held a birthday party and raised a huge £1400 +
Fundraisers of the month for February – go to children at St Hughes School in Wiltshire who had a fab cake sale in aid of Alport UK and raised a huge £170!!
Fundraiser of the month – June – goes to warrior Susan Shier who raised over £200 for Alport UK
Fundraiser of the month – May – goes to Mike Jones after his ride of miles and miles from London to Brussels via Amsterdam and raising a whopping £4000 +
Fundraiser of the month – April – goes to Alice Turner after her epic dark 5K run – and raising over £300.
Fundraiser of the month – February – goes to the Richard Pate School in Cheltenham who raised over £400 with their charity day.
Fundraiser of the month – January – goes to Christopher Davies who raised £70 holding a Share a Steak and Kidney Pie night.
Fundraiser of the month - December – goes to Saq Shahzad who has shaking tins all over Lanarkshire in his and his families shops – raising vital cash towards patient meeting days.
Fundraiser of the month – November – goes to Ciaran Calderwood who took part in Movember and raised £40.
Fundraiser of the month – October – goes to Becky Fawkus Gibbs who ran the Warwick marathon and raised over £700.
Fundraiser of the month – June - goes to Wilma Calderwood, family and friends ran a Race night with a raffle on Friday 13 June in Ayr for Alport UK. They raised £625 to help us further develop this website. Wilma’s thanks go to: Margo Smith and Julie Kiddie for all their hard work in selling horses, sourcing raffle prizes, donation of raffle prizes; Ciaran Calderwood and his band Rhetorical Minds( the youngest is 15, the oldest is 19) for giving up their time and playing at the event (proud mummy moment); Ainsley Calderwood for selling horses and promoting the event (another proud mummy moment); Susie Walker and Jules Skelding for their help with designing tickets and constant support.
alport uk want to thank Wilma for the fantastic event and also for her invaluable contributions to our Facebook page ‘alports warriers’ and her support for families in Ayrshire who have Alport Syndrome.
The closed Facebook page ‘Alports Warriors’ is where we can connect online and share tips about dealing with diagnosis, treatment or just making contact with others like us. If you would like to join Alports Warriors please click here and press the “Join Group” button.
make a donation
Please help us continue our vital work by making a donation.