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Galway man Peter Crowe will undertake a gruelling 113 km Ironman race in Salalah, Oman in September to raise funds for The Bow Foundation.
The foundation is a charity focused on supporting families impacted by GNAO1 – rare neurodevelopmental disorder currently only known in approximately 250 children globally.
The money raised will also go towards funding research and raising awareness about the neurodevelopmental disorder.
Peter’s friends’ son Rian is affected by the rare condition, meaning it is a cause which is close to his heart.
Rian, who is nearly two, had his first seizure when he was just two months old. Multiple tests such as EEGs, MRI, spinal tap, multiple blood tests, and finally, whole genome genetic testing led to the discovery of his GNAO1 mutation.
It is a relatively new condition, with the first case being discovered in 2013. The most common initial symptoms of GNAO1 include low muscle tone (hypotonia), not meeting developmental milestones, seizures, difficulty feeding and abnormal involuntary movements.
As there is no known cure, numerous medications are used in an attempt to manage symptoms. Most GNAO1 patients are non-verbal and wheelchair dependent. The Bow Foundation funds groundbreaking research across the globe for GNAO1 warriors and their families.
Their current research includes exploring gene therapy treatment that could either supplement or silence and replace the faulty GNAO1 genes that trigger symptoms in patients.
One hundred percent of the funds raised from this will be donated directly to The Bow Foundation after the race is complete. All travel, race, personal expenses etc. will be covered by Peter.
