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In an aim to help raise funds for little Dan Donoher, the Laois intermediate and minor camogie teams have come together and decided to do a 200km solo run for Dan on Friday 17th of April. Over 40 girls will complete a 5km run while soloing the ball on their hurl throughout the run. Due to the restrictions placed on us by the government all girls will be completing their run within a 2km radius of their house.
We need your support to help Dan get this life changing treatment, every little bit helps, so please donate, share and spread the word And follow us on our 200km solo run journey.
For those of you who haven’t yet heard Dans story, Dan was diagnosed on the 6th December 2019 with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis. He is 1 years of age and the life expectancy of a child with his condition is unfortunately only 18-24 months. Dan has a deletion of the Survival Motor Neuron 1 gene (SMN 1). SMA is the progressive loss of motor neurons, which are the nerve cells that control muscle movement. Dan has lost the ability to lift his legs, maintain head control and lie on his belly. As Dan has the most severe type of SMA, this damanges the muscles used for swallowing, speaking and breathing along with requiring ventilatory support. A ground breaking treatment called Zolgensma, which is currently only available in USA could save Dans life. However, this treatment costs $2.1 million. This treatment is designed to deliver a functional copy of the gene that Dan is missing (SMN 1). It had been incurable, but with this wonder drug on the market it offers Dan a chance at improved or even a normal life.
Please donate, every little bit helps.
#LaoisCamogie #DoitforDan
We need your support to help Dan get this life changing treatment, every little bit helps, so please donate, share and spread the word And follow us on our 200km solo run journey.
For those of you who haven’t yet heard Dans story, Dan was diagnosed on the 6th December 2019 with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis. He is 1 years of age and the life expectancy of a child with his condition is unfortunately only 18-24 months. Dan has a deletion of the Survival Motor Neuron 1 gene (SMN 1). SMA is the progressive loss of motor neurons, which are the nerve cells that control muscle movement. Dan has lost the ability to lift his legs, maintain head control and lie on his belly. As Dan has the most severe type of SMA, this damanges the muscles used for swallowing, speaking and breathing along with requiring ventilatory support. A ground breaking treatment called Zolgensma, which is currently only available in USA could save Dans life. However, this treatment costs $2.1 million. This treatment is designed to deliver a functional copy of the gene that Dan is missing (SMN 1). It had been incurable, but with this wonder drug on the market it offers Dan a chance at improved or even a normal life.
Please donate, every little bit helps.
#LaoisCamogie #DoitforDan
Organizer
Sara Cuddy
Organizer

