Cyclist with MND Raises Funds for a Cure

James Clarke, now 42 years old, has always loved sports. He watched as Doddie Weir, a Scottish rugby union player, tirelessly worked to raise motor neuron disease (MND) awareness. Doddie passed away in November 2022 – just about one year after Clarke’s own MND diagnosis.

According to reporting by the BBC, Clarke chose to honor Doddie’s legacy by fundraising for his charity, the “My Name’5 Doddie Foundation.” The Foundation website explains that the My Name’5 Doddie Foundation is: 

committed to helping improve the lives of those affected by Motor Neuron Disease. We help to fund grants, giving considerable sums to our friends at MND Association and MND Scotland to administer to individuals and families living with MND.

So far, the Foundation has raised over £8,000,000 (approx. $9,870,200). After fundraising on his own, Clarke donated more than £200,000 (approx. $246,755) to the My Name’5 Doddie Foundation. He hopes that sharing his story will help inspire others and make a change in someone’s life. And in the meantime, he’ll continue challenging himself, especially while cycling; Clarke even recently completed a 50-mile ride! 

An Overview of Motor Neuron Disease (MND)

Motor neuron disease refers to a group of rare and progressive neurological disorders which cause motor neuron death. Amyotrophic lateral sclerosis (ALS) is the most common form of MND. Other subtypes include primary lateral sclerosis, Kennedy’s disease, and primary bulbar palsy (among others). Regardless, MND causes nerve cells to degenerate and die, leading to muscle weakness. Typically, MND affects those aged 50+, though it can manifest at other ages. Symptoms can, but do not always, include:

  • Slurred speech
  • Unintended weight loss 
  • A weakened grip (and difficulty holding objects)
  • Difficulty walking, running, or climbing stairs
  • Muscle twitching or cramping
  • Difficulty swallowing
  • Loss of emotional inhibitions (inability to stop laughing or crying, even at inappropriate moments) 
  • Shortness of breath
  • Headaches which may worsen in the mornings

There is no cure for MND. Treatment is symptomatic, including speech, physical, or occupational therapy, or a medication called riluzole.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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