Cause UK represents Cystic Fibrosis Care, a charity set up by parent’s of Cystic Fibrosis sufferers.
31-year-old Jess Spoor, who has the life limiting disease, Cystic Fibrosis, is doing a 5K run on 25 April. This will be Jess’s first run since starting a new Cystic Fibrosis drug therapy.
See ITV Calendar’s coverage, which we helped to secure for Jess here.
In August last year, Jess cycled on her electric bike from Leeds over the Pennines from Whitehaven to Tynemouth, raising over £10,500 for Cystic Fibrosis Care.
Jess, who is from Chapel Allerton in Leeds, took her own oxygen tank to complete the gruelling 150-mile ride. In March 2018, Jess’s lung function capacity fell to 34%. If it falls to 30%, she will qualify to be on the waiting list for a double lung transplant.
At least thirty friends and family members will be joining her in solidarity via ‘self- isolating’ runs to raise money for Cystic Fibrosis Care. The funds will go to COVID-19 ‘hardship grants’ for individuals with the condition.
Jess, who was born with Cystic Fibrosis, a genetic lung disease, enjoyed a full and active life until two years ago when she started suffering from repeated chest infections; she had to make the tough decision to leave her job in human resources at Asda in Morley. She was a keen runner and gym-goer until her health deteriorated.
Cystic Fibrosis is one of the most common life shortening chronic fatal genetic diseases affecting around 10,000 children and young adults in the UK. It affects the lungs and digestive system, making it difficult to breathe and digest food. Complications increase with age requiring ever increasing levels of care, treatment and support. The average life expectancy is in the late 30’s. There is no cure.
Patricia Kilpatrick, Director of Cystic Fibrosis Care, said: “During the COVID-19 lockdown we are giving grants during this difficult time to patients and families via hospital Cystic Fibrosis teams. Recently, we gave a grant to a young family with little baby born in January with Cystic Fibrosis, mum is on maternity leave and dad lost his job in March and he is waiting for his benefits to be processed.”
Another hardship grant was offered to a 17-year-old who lost his childhood DWP allowance, paid to his parents, which helped towards food bills. His mother is also in a vulnerable group and her husband cares for her, so the family are struggling at this time to get enough food for their son who needs an extra 50% more calories than others.
Patricia said: “Some parents of children with Cystic Fibrosis are struggling financially at this time, to be able to afford the extra food for their children to maintain weight and rely on specialist high calorie shakes to get the calories they need. One child has lost just under half a stone, and he cannot afford to lose any more weight. This is causing him to become worried, anxious and upset, as he is so conscious about maintaining his weight to stay as healthy as possible.”
Patricia added: “We can’t thank Jess and her friends and family enough for running to raise funds for our COVID-19 hardship grant. She is helping to throw the spotlight on the particular challenges Cystic Fibrosis patients are facing during the pandemic.”
Cystic Fibrosis Care is encouraging its supporters to do a virtual run to raise money for its hardship fund, to date over 60 people have signed up.
To find out more about Cystic Fibrosis Care and to sign up to the virtual run go to http://www.cysticfibrosiscare.org.uk/
About Cystic Fibrosis Care
Cystic Fibrosis Care was established in June 2015. It is a charity formed and run by professional fundraisers who are parents of children who have Cystic Fibrosis. The charity provides essential services and equipment, practical help and support to children and adults, their families and Specialist Care Centres.
The disease is one of the most common life shortening chronic fatal genetic diseases affecting around 10,000 children and young adults in the UK. It affects the lungs and digestive system, making it difficult to breathe and digest food. Complications increase with age requiring ever increasing levels of care, treatment and support. The average life expectancy is in the late 30’s. There is no cure.
Charity number 1162445
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