CLC Utilities Helping To Raise Funds For Cystinosis Ireland
From 5th – 24th May 2019 two Affinity Water employees, Rob King and Gary Pemberton, undertook an intense challenge to cycle around Ireland. The charity bike ride was undertaken to fundraise for Cystinosis Ireland.
CLC Utilities were proud to support this incredible charity by contributing an additional £500 to Rob and Gary, spurring them on to success.
Cystonosis is rare disease which is caused by genetic mutations affecting children. It causes the body to accumulate too much of the amino acid ‘cystine’ in various bodily organs including muscles, eyes, pancreas, kidneys and brain. There are various different types of Cystinosis. The build-up of cystine causes organ and tissue damage and the symptoms and effects are quite wide-ranging.
Cystinosis can have fatal and serious outcomes. There is no cure. However, with treatment (predominantly kidney transplants) patients can be helped. Cystinosis Ireland is a leading charity supporting families living with the condition, as well as raising funds to drive research in the hope of finding a cure.
Cystinosis has directly affected the lives of Affinity Water employee Gary Pembleton. Two of his nieces, living in Ireland, have the disease.
This charity bike ride was quite a challenge for Gary and Rob, not least because neither of them are your stereotypical cyclists that you see clocking up the weekend miles in the saddle. Nonetheless, both embraced the challenge and undertook an anti-clockwise route around Ireland starting from Dublin. They had no support car and had to carry all of their own kit.
Why CLC Utilities got involved
We are proud to support charities, especially where our employees are making a direct contribution to such an important cause. As Sue Maguire of Cystinosis Ireland wrote to Tony Jupp CEO:
“Due to the incredible rarity of this condition, large pharmaceutical companies will not invest in research or drug development, which is tremendously expensive, as they know they will not financially benefit from their investment. Therefore, all cystinosis related research being done worldwide is almost exclusively funded by patient groups like Cystinosis Ireland.”
We absolutely felt that this cause needed our support and given its direct impact on Gary’s family, wanted to support Gary and Rob in their fundraising efforts.