Supporting the vital research the team at Edinburgh are undertaking we also need to secure funds for the Annual conference that brings the families together, and the leading clinicians/experts in their fields present findings / updates back to parents.

Initially I started just myself about target of 200 miles cycling. But friends joined to extend to 500 miles and my family joined to make it 1000 miles target by cycling,walking,running and swimming in July 2020. We managed 2450.65 miles - July 2020.

We are comitted to duplicate the same effort this year July 2021.

Anyone can join us and help us by chipping few miles or donate/sponsor us to motivate. More team members = More miles = More shares = More donations = obviously more awareness.

Massive well done to all friends and family👍🏽

More info about the condition - https://uce0d01d765b05e762d45afdd8ed.dl.dropboxusercontent.com/cd/0/get/A65ZRgQE7AuTX6A8-US-hyVBmTHok5kEIdaZz9hx7fIxPffJ1zb4fLDs1_10dlS3RKkVrTPlBr0fhKmesLKnrT8LC-w1z-TuOn4BXYnQc0J4WzaqJMAPLP0i5aFnha51nV8/file?dl=1