In support of Rare Disease Day 2025, Glen has shared a powerful and deeply personal account of his journey with Cerebellar Ataxia—a condition that has shaped his life in ways he never expected. His honesty, resilience, and love for his family shine through, reminding us all of the strength it takes to keep moving forward.
What is Cerebellar Ataxia?
Cerebellar Ataxia is a neurological disorder that affects balance, coordination, and speech due to damage or degeneration of the cerebellum, the part of the brain responsible for motor control. It can be caused by genetic mutations, strokes, multiple sclerosis, or other underlying conditions. Symptoms often include:
- Unsteady movements (walking difficulties, frequent falls)
- Poor coordination (difficulty with fine motor skills)
- Slurred speech (dysarthria)
- Tremors and involuntary movements
- Difficulty swallowing (in some cases)
Currently, there is no cure for Cerebellar Ataxia, but treatments such as physiotherapy, speech therapy, mobility aids, and emerging medications can help manage symptoms and improve quality of life.
Glen’s Journey
Glen’s battle with Ataxia began around 1999-2000 when he noticed issues with balance and coordination at the age of 19 or 20. His speech, already slightly slurred, worsened over time, leading him to seek medical advice. In 2001, an MRI scan confirmed severe cerebellar atrophy, and he was diagnosed with Cerebellar Ataxia. The news was difficult—there was no cure, and his condition would progressively worsen.
For years, Glen has faced misconceptions and discrimination due to his symptoms. He has been mistaken for being drunk, breathalysed by police, and denied entry to venues. These experiences have, at times, led him to dark places. However, his family has been his anchor.
A Father’s Greatest Fear and His Source of Strength
Now a husband and father of three, Glen’s greatest heartbreak came in 2020 when his youngest daughter was diagnosed with the same condition at just three years old. Knowing that Ataxia is hereditary was devastating. Yet, despite the struggles, his daughter remains a ray of light, choosing joy over sadness and adapting in ways that inspire him every day.
Hope for the Future
Though watching his daughter struggle is heartbreaking, Glen holds onto hope. New treatments and medications are being trialed, offering a potential brighter future for those affected by Ataxia. Until then, he continues to learn from his daughter’s resilience—a reminder that even in the face of adversity, hope and love prevail.
Support & Contact Information
If you or someone you know is affected by Cerebellar Ataxia, there are support groups, charities, and resources available to help:
- Ataxia UK – www.ataxia.org.uk | Helpline: 0800 995 6037
- Rare Disease UK – www.raredisease.org.uk
- Genetic and Rare Disease Information Center (GARD) – rarediseases.info.nih.gov
- Local Support Groups – Contact your GP or local health service for Ataxia-specific support networks.
Thank you, Glen, for bravely sharing your story and raising awareness for Rare Disease Day 2025. Your strength and honesty are truly inspiring!
