If I'm honest, I have been delaying setting this page up. This is my fourth year of fund raising. Due to everyone's generosity - family, friends, colleagues and The Siemon Company - I have managed to raise over £30,000 over the past three years through various cycling challenges. But I appreciate it is a lot to keep asking people to support our fundraising for something which is so personal.
But its time to remind myself why I have to put myself out there again - its to raise money for our chosen charity Harrison's Fund, to help find a cure for our 5-year old son Austin, who has Duchenne muscular dystrophy, and other boys like him. A severe muscle wasting disease, typically affecting boys and putting them in a wheelchair by age 12 and with a life expectancy only into early 20's. No matter how much or how little I raise, I have to at least do what I can to try.
This July I am going to be cycling from Biarritz on the Atlantic West Coast of France to Perpignan on the Mediterranean. But across the Pyrenees mountains in 4.5 days. To put it another way, 735km/456miles, encompassing 12,840m/42,125ft ascent. That's like cycling over Mount Everest 1.5 times!
Most importantly though I wanted to give you an update on where some of the money raised over the past three years has been going and an update on Austin.
As I said there has been incredible generosity and its making a real difference. Harrison's Fund are involved in research into:
- Gene Therapy, an ultimate cure Cell Therapy, using stem cells derived from muscles;
- Exon skipping, intended result is for the muscle cell to produce the missing protein, dystrophin;
- Genome surgery to repair the genetic mutation that causes DMD;
- Working with World leading scientists at University College London, Royal Holloway University London and University of Reading;
- Harrison's Fund are currently funding 16 projects in UK and USA and lobby on behalf of Duchenne community and is at forefront of important decisions around the future progress of securing treatments and trials for the disease. One of the most promising is the Exondys 51 drug which was granted approval by the FDA in the US. Austin is receiving this very same medicine.
And Austin started a trial for this drug in October 2017 which is a treatment to help his body produce more dystrophin, the protein his body is unable to produce as effectively as it should, leading to muscle deterioration. It is too early to tell if this is working, but we remain incredibly hopeful and grateful that Austin is able to participate in this trial, which his mum Maxine takes him to every Wednesday at Great Ormond Street Hospital.
And to end, as I always say, if you have read this far, you are obviously somebody who cares and are possibly about to make a donation. Thank you from the bottom of our hearts. Together we can beat this cruel disease.
With gratitude always,
Steve, Max, Ava and AUSTIN!