Chosen Charity: Ehlers Danlos Society

Projected fundraising figure: £1.5K

Climbers: Imogene Newland, Kamil Drewniak & Sam Percival

Support team: Ian Williamson, Lara Davies & Rebecca Fry

Film: Faust Talacka

Projected Event Date: 2-6 May 2025

Alternative Dates: 6-10 July 2025 (as the project is weather dependent)

Black Cuillin Ridge Traverse (Isle of Skye, Scotland, UK)

To help raise funds and awareness for EDS Society, Imogene is going to attempt the Black Cuillin Ridge Traverse on the Isle of Skye, with help from an experienced team of mountain leaders. The Black Cuillin Ridge Traverse is the pinnacle of UK scrambling, where steep drop-offs and complex route-finding transform a 12km traverse into a two-day epic. With 22 summits and over 4,000m (13,000ft) of ascent, the Black Cuillin Ridge is Scotland’s final frontier for climbers.

Ehlers Danlos Syndrome

Ehlers Danlos Syndrome is a heritable condition that affects the integrity of collagen in connective tissue. This means that joints and other significant structures of the body are not held together securely, leading to either partial or full dislocations. Where the joints in the head and neck are involved, it can lead to neurological symptoms including slurred speech, difficulty walking, fainting and seizures. For others, the major organs and digestive tract can be affected, leaving sufferers unable to eat and reliant on a feeding tube.

The average time to get diagnosed with EDS is currently 10-12 years. Considered to be rare, EDS is represented by the symbol of a zebra. Sufferers are left waiting for answers with little support. This can often mean a spiral into depression and can lead to a lack of independence and confidence to live life. The EDS Society have been at the forefront of an educational drive to help spread awareness about EDS and its many and varied manifestations.

Imogene’s Story

Imogene became ill and was initially diagnosed with chronic fatigue in 2007. After a brief remission, she relapsed in 2009 with more severe symptoms including speech and walking difficulties, fainting and seizures. The assessing neurologist told her she was hysterical. For the next seven years, Imogene was unable to work, live or travel independently. Along the way Imogene and her family spent over £20,000 searching for support and answers. Eventually, after a further significant relapse, Imogene received her diagnosis of Hypermobile Ehlers Danlos Syndrome (hEDS) in 2022. It was then that she learned her cervical spinal was unstable, her C1 partially dislocated and compressing her left jugular. She has worked tirelessly to strengthen her joints so that climbing and hiking could become a reality for her again.

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