Samantha Smith to launch new EDS charity at glitzy masquerade ball

Samantha Smith will be launching a charity for Ehlers Danlos Syndrome sufferers at a glittering masquerade ball on Friday 20 September.

The ball will officially launch Samantha’s charity, the EDS Foundation, which has grown from the two-year-long ‘Save Samantha’ crowdfunding campaign to fund lifesaving neurosurgeries in the USA between 2017 and 2019.

Guests at the masquerade ball will enjoy a champagne reception before a delicious three-course meal and an evening of entertainment, including celebrity guests, a jewellery raffle and a charity auction with incredible prizes.

Samantha said: “You saved me... now let’s celebrate and help to give others a chance too.”

 

 

Mum of two Sam, of Smithy Bridge, was diagnosed with Ehlers Danlos Syndrome (EDS) in December 2016, a genetic condition where connective tissue holding the body together is faulty and too weak.

Further related complications followed, which left her at risk of internal decapitation.

Rochdale Online has closely followed Samantha’s journey since April 2017, when we broke the news of her desperate race to raise £150,000 for her initial lifesaving neurosurgery.

EDS affects around one in 5,000 people worldwide, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses. It can affect different types of connective tissues that provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

The NHS lists four types of EDS, although there are understood to be as many as 13 varieties with symptoms like an increased range of joint movement (joint hypermobility), stretchy skin, fragile skin that breaks or bruises easily.

Sam has previously called for greater education on the condition, which she says is “massively misdiagnosed.”

• www.rochdaleonline.co.uk/news-features/2/news-headlines/113174/samantha-smith-calls-for-greater-education-on-ehlersdanlos-syndrome

After four neurosurgeries and almost £500,000, Samantha’s life was saved, allowing her to return home and rebuild her life.

• www.rochdaleonline.co.uk/news-features/2/news-headlines/127906/samantha-has-been-saved

Whilst rehabilitating, she set about her mission to turn her pain into purpose and ensure that others, like her, living with EDS and associated conditions have improved access to care here in the UK.

Masquerade Ball

Champagne reception, a delicious three-course meal and an evening of entertainment, including celebrity guests.

Tickets cost £50 – discounts available for full table bookings.

All proceeds raised on the night will go to the EDS Foundation.

Book now to avoid disappointment:

• www.rochdaleonline.co.uk/events/62500/events-in-rochdale/masquerade-ball