Owen's run for AHC
Owen Cant is raising money for Alternating Hemiplegia Of Childhood Foundation Inc
Story
I am running the 2023 Manchester Marathon in aid of the AHC foundation, a charity behind the ultra-rare disease Alternating Hemiplegia of Childhood, whom my relative Anya (in picture), lives with each day.
AHC is a genetic, mostly non-hereditary disease that affects less than one in a million people worldwide. It is like having seven diseases at once. Symptoms include:
- Paralysis like Stroke
- Seizures and spells of reduced consciousness like Epilepsy
- Low muscle tone like Cerebral Palsy
- Movement problems like Parkinson’s
- Behavioral issues like ADHD
- Learning challenges like Autism
- Neurodegeneration like Alzheimer’s
As it is such a rare disease, it struggles to gain the same attention and research funding from pharmaceutical companies, as the limited amount of people with it means there is only limited profit to be made.
Currently, the gene therapy project (http://ahckids.org/aavproject/) is aiming to find a way of inserting a good copy of the defective gene (ATP1A3) into people with AHC, to potentially find a cure or lessen the effects of AHC. This project and other AHC research projects are funded in the majority by the family and friends of those with the condition. Which is why we need your help!
Any contribution you can give, really will make a difference.
I have also made a short documentary, 'One in a million', about Anya's AHC and the effects it has on day to day family life.
Watch the trailer: https://vimeo.com/394448986
Watch the full film: