In the UK around 145,000 people are already living with Parkinson’s and every hour, two more people are diagnosed. That means, around 18,000 people every year, or 1 in 37 people alive today, will be diagnosed with Parkinson’s in their lifetime.
This is not just a disease of the elderly - anyone can get Parkinson’s, young or old. The 2016 case of juvenile onset Parkinson in a two year old child in Canada recently underscored this bitter truth.
As the fastest growing neurological condition in the world, there is currently no cure for Parkinson's. It is an overwhelming condition for sufferers, causing problems in the brain that affect and diminish physical and mental abilities over time.
Yet one inspirational adventurer has made it his mission to become the first person with Parkinson’s to climb Mount Everest.
Alex Flynn was 36 when diagnosed with Parkinson’s in 2008. He has since raised around £400,000 in the last ten years, through a series of punishing sponsored challenges in extreme conditions around the world, to support research into the disease.
We first met Alex at a conference in Barcelona in 2019 and his message about the importance of public awareness and listening to the patient voice resonated with mdgroup’s own mission. We seek to revolutionise the clinical research industry by championing the needs and drivers of patients to deliver a better quality of life for patients taking part in clinical trials.
mdgroup made a commitment to sponsor Alex and support him in any way we could in his quest to conquer Everest, and critically to raise funds and awareness for neurological diseases.
The humanity behind the disease
An adventurer at heart, Alex is no stranger to endurance challenges. To date he has completed a 160-mile run in the Bavarian Alps, an ultra-marathon in the Saraha desert, a 450km expedition in the Swedish Arctic, and a 3,256-mile voyage across the United States by bike, kayak and on foot.
While lockdown has meant Alex had to put his Mount Everest plans on pause, he still found new ways to challenge himself. He climbed the equivalent of 4.6 times the height of Everest by undertaking a vertical marathon on his stairs at home.
With lockdown eased, he has scaled Mont Blanc in Europe and this month is tackling the Nepalese Mera Peak in the Himalayas, in preparation for Mount Everest in April 2022.
His achievements are remarkable for any individual. As a Parkinson’s sufferer, they speak volumes for his resilient mindset and for how we all need to consider the human at the heart of the disease.
Alex speaks frankly about what living with Parkinson’s means for him. He describes how with such a neurological disease, people ‘lose a little part of themselves’ every day, which over time ‘leads to a lack of confidence and a loss of self-worth’.
“There are so many people out there with neurological diseases and so many feel isolated, alone, ostracised, and made to feel different because people simply don’t understand them,” said Alex.
“I want to change that. I want to show people what’s possible and raise awareness of the humanity behind the disease.”
Changing public perceptions
Alex hopes his adventure will give other people with neurological diseases hope. He wants to inspire them to tackle their ‘personal Everest’, whether that is getting across their living room or going to the shops.
As Alex explains, “If I achieve what I set out to do at 14 years post-diagnosis and probably living with Parkinson’s for more than 20 years, I think it will change minds about neurological disease and raise attention of and money to fund the creation of better treatments.”
“It’s not just an old person’s disease. If a two-year-old boy is diagnosed, imagine what that kid will go through. That makes me even more determined to do everything in my power, and with every opportunity I have, to raise funds for Parkinson’s research so that people with neurological disease, and in particular Parkinson’s, can one day say that they used to have Parkinson’s.’
Diagnosis is no barrier
As well as raising money, Alex hopes his Everest challenge will prove that ‘diagnosis is no barrier to being able to achieve your goals and dreams’.
The challenges he puts himself through are also benefitting him in multiple ways. As he explains, “My self-confidence and self-worth have been boosted by the belief and my ability to do these challenges. I believe the extreme exercise has been exceptionally beneficial in stopping my deterioration or slowing my deterioration down. It has kept me going.”
For us at MD Group, Alex’s healthy approach to life whilst living with Parkinson’s is why we do what we do.The importance of humanising every aspect of clinical research is vital and I am passionate about making sure our clinical servicing and everything we do, inside and outside the business, is done with compassion and kindness.
COVID has probably advanced where the industry was going by about 10 years and the global response has accelerated servicing much faster than was potentially planned. Process is vital to ensuring the efficiency and success of clinical trials – of course – but when the chips are down, all people want is social interaction, especially patients when they’re feeling uncertain or worried. They need someone to help them, and I would love for that to be us.
We see our technology as an enabling tool for our personal and personable service. It’s an enabler of what we do, not just what we do. We are a patient services business that uses technology to enhance the patient experience, not a just digital patient services platform.
Like Alex, we want to see clinical developments that can bring life changing therapies much faster to patients. We saw what was achieved at speed with COVID-19, and we all hope for similar speed, commitment and funding for research into other critical disease areas.
We are beyond proud to hear Alex say that the support of organisations like mdgroup has a huge impact: “It makes the biggest difference,” says Alex. “I know you’re fully behind and supporting me all the way. It’s not just the money, but the fact you believe in me and what I’m trying to achieve.”
We want to see more organisations, and indeed all of society, recognising the challenges faced by many who are diagnosed with life changing conditions.
Like Alex, we want to champion the importance of listening to those patient voices and understanding what continues to drive them and inspire them to lead their most fulfilling lives.
We want to support them as they support the vital research into new therapies.
In order to take on the mountain, and to increase global awareness of Parkinson’s, Alex is also in need of sponsorship to cover the costs of the feat. We encourage people able to donate towards his challenge to go on his GoFundMe page.
All funds raised in Alex’s Everest quest will support Parkinson UK
Tarquin Scadding-Hunt is CEO of mdgroup