Racing for Dad & the MND Association
Donation protected
Remember this?
In 2014, the Ice Bucket Challenge helped raise over $100m for Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurone Disease (MND).
It’s a disease in which the motor neurons that control your muscles slowly die. You lose the ability to use your hands, to walk, to eat, to speak, and eventually to breathe. There is still no effective treatment.
In summer 2017, our dad mentioned his left hand was feeling a bit weak. We didn’t think much of it. But the weakness slowly got worse and by the following May, he could hardly use it. It just wouldn’t do what he was asking it to. He was diagnosed with MND on the 17th October 2018.
He is still in the early stages of the disease, but it is difficult to watch. He can hardly hold a fork, tie his shoelaces, press the button on his electric toothbrush, shave, cut his nails, pull up his trousers. Things we do without thinking take him every ounce of concentration and strength. Soon he won’t be able to swallow his own saliva or go to the bathroom alone. There will be feeding tubes, ventilators, muscle spasms – and he won’t be able to speak, walk or write.
In spite of this, our dad is determined to beat this disease with his mind. Before he takes his pills he says ‘mi curerai’: ‘you will cure me’. He does his breathing and stretching exercises every day. He stubbornly tries to button his shirt, even if every button takes 10 minutes with hundreds of failed attempts. He signs off all his emails Positive Papà.
Despite all the money raised through the Ice Bucket Challenge, there is still no cure or effective treatment for MND. That’s why my sister and I are raising money to help our dad and others with the disease.
In August 2019, I will be at the start line of Copenhagen Ironman, hopefully completing a 3.8km swim, 180 km cycle and 42km run before the cut-off of 15 hours and 45 min.
My sister, Stéphanie, will be running an Ultramarathon in Albania - a 220km trail race with 8,000m of ascent over 6 stages.
You can follow us on Instagram – @chiaraquad and @stephanie_quadranti – to see our progress.
The money we raise will go to two causes.
Half will go directly to our dad.
Research by the MNDA shows that living with illness costs on average £9,645 every year with additional one-off costs amounting at least to £2,175. (http://bit.ly/mndcosts). In many cases it is more.
A wheelchair: £1,500
An eye-gaze computer: £2,000
A year of part time care (14 hours a week): £11,000.
A year in a nursing home: £41,600
My parents have cared for us their whole lives, sacrificing many things along the way. Now it’s our turn to care for them and we are unimaginably grateful for your donations, however small. They will help secure a life that is a little bit easier for them both.
The other half will go to the MND Association. One day – perhaps in our lifetimes – there will be a breakthrough which will give back life to people seeing their body shut down on them. If, together, we can contribute even a small amount to this breakthrough, that would be something to be proud of.
Thank you.
Chiara & Stéphanie
In 2014, the Ice Bucket Challenge helped raise over $100m for Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurone Disease (MND).
It’s a disease in which the motor neurons that control your muscles slowly die. You lose the ability to use your hands, to walk, to eat, to speak, and eventually to breathe. There is still no effective treatment.
In summer 2017, our dad mentioned his left hand was feeling a bit weak. We didn’t think much of it. But the weakness slowly got worse and by the following May, he could hardly use it. It just wouldn’t do what he was asking it to. He was diagnosed with MND on the 17th October 2018.
He is still in the early stages of the disease, but it is difficult to watch. He can hardly hold a fork, tie his shoelaces, press the button on his electric toothbrush, shave, cut his nails, pull up his trousers. Things we do without thinking take him every ounce of concentration and strength. Soon he won’t be able to swallow his own saliva or go to the bathroom alone. There will be feeding tubes, ventilators, muscle spasms – and he won’t be able to speak, walk or write.
In spite of this, our dad is determined to beat this disease with his mind. Before he takes his pills he says ‘mi curerai’: ‘you will cure me’. He does his breathing and stretching exercises every day. He stubbornly tries to button his shirt, even if every button takes 10 minutes with hundreds of failed attempts. He signs off all his emails Positive Papà.
Despite all the money raised through the Ice Bucket Challenge, there is still no cure or effective treatment for MND. That’s why my sister and I are raising money to help our dad and others with the disease.
In August 2019, I will be at the start line of Copenhagen Ironman, hopefully completing a 3.8km swim, 180 km cycle and 42km run before the cut-off of 15 hours and 45 min.
My sister, Stéphanie, will be running an Ultramarathon in Albania - a 220km trail race with 8,000m of ascent over 6 stages.
You can follow us on Instagram – @chiaraquad and @stephanie_quadranti – to see our progress.
The money we raise will go to two causes.
Half will go directly to our dad.
Research by the MNDA shows that living with illness costs on average £9,645 every year with additional one-off costs amounting at least to £2,175. (http://bit.ly/mndcosts). In many cases it is more.
A wheelchair: £1,500
An eye-gaze computer: £2,000
A year of part time care (14 hours a week): £11,000.
A year in a nursing home: £41,600
My parents have cared for us their whole lives, sacrificing many things along the way. Now it’s our turn to care for them and we are unimaginably grateful for your donations, however small. They will help secure a life that is a little bit easier for them both.
The other half will go to the MND Association. One day – perhaps in our lifetimes – there will be a breakthrough which will give back life to people seeing their body shut down on them. If, together, we can contribute even a small amount to this breakthrough, that would be something to be proud of.
Thank you.
Chiara & Stéphanie
Organizer
Chiara Quadranti
Organizer