I've raised £5000 to fund research and raise awareness for Churg Strauss Syndrome (EGPA), and support my brother Sam and his family through this condition
Organised by Evie Penington
Story
On 23rd August 2020 I will be attempting 3871 BURPEES continuously for approx 24hrs (each jumping to hit a 7.5ft marker, which will total 29,029ft = The height of MOUNT EVEREST)
Sam's Story
My name is Evie and my brother Sam was diagnosed with Churg Strauss Syndrome in 2017 at the age of 25, Churg Strauss Syndrome (now renamed Eosinophilic Granulomatosis with Polyangiitis (EGPA)) is a rare auto immune disease, just 1-5 cases per 1 million people, causes inflammation of the blood vessels and is fatal if left untreated. There is currently no known cure or cause. The lungs and skin are commonly affected but it can affect other organs including the heart, kidneys, nerves and bowels.
After a tough spout of being in and out of hospital and intensive care, the hospital found abnormal cells in Sam's bowel and was then diagnosed with high grade B cell non Hodgkins Lymphoma and has undergone Chemotherapy.
Before treatment for EGPA/Churg Strauss Syndrome was available, it was universally fatal. Half of patients diagnosed with EGPA died within 3 months of diagnosis. With developments in treatment, this is improving and they think that 8 in every 10 people diagnosed are still alive 5 years later.
Through first hand experience, a major frustration is that the majority of experienced doctors Sam encounters have never even heard of this condition, and if he did not receive the correct treatment he probably wouldn't be with us today. Sam is just 29 years old and whilst fighting his condition, is also raising his two beautiful babies.
With this in mind I am on a mission to raise awareness for Churg Strauss Syndrome/EGPA, raise money to fund research and to support my brother along his journey.
On 23rd August I will be doing BURPEES in which the height I jump will EQUAL the height of Mt. EVEREST.
Everest = 29,029 ft
One burpee jump I will hit a 7.5ft marker. so 29,029ft divided by 7.5ft = 3870.533333. I've rounded this UP to equal 3871 burpees. If I do 161 burpees an hour, this will take me 24 HOURS. I am currently undergoing an intense training regime and you can follow my journey on my Instagram account @eviepenington
The charity I am supporting is Vasculitis UK who have more information on Churg Strauss Syndrome here, I will be splitting the funds raised between Vascilitis UK and to support my brother and his family during this difficult time.
#ChurgStraussSyndrome #EGPA #BurpeesXEverestCharityChallenge
