Ali Robertson (Land Economy 1990-1991) recently contacted us with the heart-breaking news that his five-year-old son, Felix, has Duchenne Muscular Dystrophy, an incurable and fatal muscle wasting disease that kills more children than any other genetic condition. There is accelerating deterioration from birth, resulting in a significant decrease in quality of life by age 7 to 8, wheelchair dependency by early teens, loss of upper body function, including swallowing and breathing, by late teens and a lingering death in mid-twenties from lung failure and heart disease.
The reality is apparently not as hopeless as it sounds, thankfully! Real progress is being made in the development of new treatments that have the potential to alter and hopefully even cure Duchenne. And in the shorter term, ongoing research is identifying a combination of drugs approved for the treatment of other diseases that are showing real promise in slowing and perhaps even halting the progress of the disease.
Whether it’s novel or repurposed drugs, their development costs a lot of money, which is why Li and a group of friends is cycling from London to Monaco, 9th – 17th June, covering 1,500 km’s and climbing 18,000 m’s in 9 days, with the aim being to raise as much money as possible to further vital research and get a combination or repurposed in to trials and patients as quickly as possible.
Ali would like to ask you to please sponsor the ride. He has a giving page (http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=dashmax17&isTeam=true) or you can send him a charity cheque (The Deverells, Chestnut Hill, Nailsworth, GLOS GL6 0RA) made payable to Duchenne UK, charity no. 1147094
All the money raised will go to Duchenne UK (https://www.duchenneuk.org/). The charity was founded by Emily Crossley and Alex Johnson, both mothers of Duchenne boys. They’re unbelievably passionate and effective and almost all (90% plus) of the money they raise and receive funds research and trials. The charity is transforming the outlook for this and future generations of Duchenne patients.
We appreciate that you are bombarded with similar request but….. Duchenne is hopelessly under-funded at every level compared with other diseases, despite the fact that it effects 1 in 3,500 boys and afflicts approx. 300,000 children globally. And unless treatments are quickly developed that slow the disease whilst the development of a cure progresses, every child that has the disease will suffer a horrible death at a time when most youngsters are entering their prime.
If you would like further information on the ride, disease and charity or have any thoughts or ideas around how you can help, please contact Ali direct at firstname.lastname@example.org or on 07710 190667.
And finally, if you’d like to meet Felix, please watch the following film that Ali’s wife, Robyn, has made to promote the ride: https://www.youtube.com/watch?v=RT6NbwZVLmI.