Action for Alports
The Action for Alports campaign was launched in 2011 to raise money to fund specific research into Alport Syndrome and has gained support from many patients and their families over the years. Deborah Fielding, a parent who initiated the campaign, remains involved today.
The campaign’s aims
- Raise awareness and understanding of the illness
- Provide better care and facilitate faster diagnosis
- Improved management for those affected by the illness
- Ensure a much better future for Alport patients and their families
Achievements so far
- We have funded the development of a next generation sequencing tool
- We supported the UK Alport family day in December 2012 and contributed a donation to a scientific meeting in Jan 2014
- Jointly set up the Rare Disease Registry (RADAR) which is a comprehensive database containing details of people in the UK who suffer from a number of rare kidney conditions, of which Alport Syndrome is one
Latest project – we need your help
The latest research project is helping us understand the mechanisms that control the structure of the kidney filter, which is abnormal in Alport Syndrome.
It is a 2 year project with Dr Rachel Lennon as the Principal Investigator at Manchester University and she is working with a co-Investigator Professor Miner in the USA. The cost for the two year project is £142,000 and work started in September 2014.
By August 2015 the Action for Alports Campaign fundraisers have raised over half of the money for this research project, just over £71,500. The Action for Alports Campaign need to raise the remaining £70,500 to ensure this vital research continues.
There are many ways you can get involved and help support this campaign from donating money to taking part in one of our events, or organising your own.
For more information or support with any fundraising please contact 0300 3031100 or firstname.lastname@example.org.
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Please make sure you quote ‘Action for Alports campaign’ in any correspondence or when sending donations through the post.