Nathan is 33 years old, has Cerebral Palsy and was diagnosed with Pelizaeus- Merzbacher disease at the age of 17. Pelizaeus-Merzbacher disease (PMD) is a rare X-linked genetic disorder affecting the central nervous system that is associated with abnormalities of the white matter of the brain and spinal cord. It is one of the leukodystrophies in which disease is due to abnormal development of one or more components (predominantly fats or proteins) that make up the white matter (myelin sheath) of the brain. The myelin sheath is the protective covering of the nerve and nerves cannot function normally without it. In PMD, many areas of the central nervous system may be affected, including the deep portions of the cerebrum (subcortical), cerebellum, brain stem and spinal cord. Signs may include the impaired ability to coordinate movement (ataxia), involuntary muscle spasms (spasticity) that result in slow, stiff movements of the legs, delays in reaching developmental milestones, late onset loss of motor abilities, and progressive deterioration of intellectual function. The neurologic signs of PMD are usually slowly progressive. https://rarediseases.org/…/pelizaeus-merzbacher-disease/
Nathan had a long-time goal to ride a long distance on his hand-cycle, and his desire was to raise funds to inspire research into PMD – Nathan would like to be cured of this insidious disease as anyone would be. Nathan achieved this dream in March 2021 when he rode his hand-cycle from Noosa to Redcliffe on selected cycle trails. Nathan gained local published and radio media coverage and trained with his key support worker Matt. He rode over 1000 km’s in the year leading up to his ride. He totalled 115 KM’s over six days in March 2021 with the help of his dedicated family, wonderful volunteers and the team from Holistic Horizons Support Services. It was truly an unbelievable effort against all odds. We are very proud of him.
In the 12 months before his Noosa to Redcliffe ride, Nathan’s father was diagnosed with cancer, which thankfully he survived. It was decided in view of this that funds raised should go towards Nathan’s future provision with 10% given to Leukodystrophy Australia as there is no research into PMD in Australia, and very little research world-wide.
It was then proposed that the “Ride for Nathan” be run annually, for as long as Nathan can ride, and then continued as a legacy to Nathan for other differing ability participants to continue. Nathan, his family, and the team are especially keen to have greater research into PMD become a reality. Nathan’s immediate need is his own modified van. Nathan finds it ever harder to get in and out of
regular vehicles, and the risk of injury to family and support workers is real when helping him into and out of a vehicle. Any funds raised this year would assist with that need.
Follow along with video updates on Facebook, as he trains around in his local area for his third Big “Ride for Nathan” and give him a thumbs up if you see him, or comment for encouragement!