High-profile appointments “add critical weight and credibility” to charity’s mission to increase awareness and advocacy of Ehlers-Danlos syndromes (EDS)
BAFTA Cymru Award winner named as first Ambassador for Mind Body EDS™
Charity links up with EDS showjumper in development of ‘The Dark Horse’ documentary - support for EDS sufferers “needed more than ever during COVID-19 crisis”
Mind Body EDS™ (MB-EDS) has announced the appointment of young award-winning film-maker, musician and EDS sufferer, Ashleigh Harley, to be its first Ambassador as the charity continues to build support and awareness of Ehlers-Danlos Syndromes (EDS), a potentially fatal connective tissue disorder affecting huge numbers of sufferers of all ages.
Ashleigh’s family first became aware that she had EDS when she was 12, but her symptoms were not officially diagnosed until several years later. She wrote her first novel, The Messenger, when episodically paralysed in hospital and subsequently directed a related fantasy film, The Wall of Lyon (www.ashleighharley.com/the-wall-of-lyon), which was showcased at the Cannes Film Festival and won over 40 awards internationally, including a BAFTA Cymru.
Working with Oscar-winning production team, Slick Films, and with support from MB-EDS, Ashleigh’s latest film ‘The Dark Horse’ documents her journey living with EDS and her mission as a keen horsewoman to get show jumping included in the World Paralympic Games. Due for release in 2021, the film will also feature MB-EDS founder Laura Sylvester’s own EDS story and, as with The Wall of Lyon, will be presented at film festivals and screenings around the world.
A passionate advocate in raising awareness for EDS, Ashleigh “is hugely excited to be able to collaborate with MB-EDS in this ambassadorial capacity. As a patient and a family suffering from this invisible but devastating illness,” she says, “we are totally aligned with the goals of this dynamic charity. I believe this collaboration will add valuable weight and gravitas in our campaign to achieve greater public awareness of the issues around EDS across a broad range of media channels.”
Bridging the funding gap
Launched in 2018, MB-EDS has undertaken a number of successful fundraising initiatives, which has enabled it to give more than £64,000 in grants to individuals desperate to speed up getting the right diagnosis and treatment for what is still a little-understood condition.
“However,” says MB-EDS chairman, John Hogan, “like other charities, the more recent switch by donors to generic NHS charities has had a devastating impact on our fundraising capability, with the result that we are currently unable to continue providing financial support to those in critical need. Although the funding focus on the terrific work being undertaken by the NHS in fighting the COVID-19 pandemic is understandable,” he believes, “the almost total loss of income to charities targeted at providing practical help to those with other chronic illnesses is impacting both sufferers’ physical and mental health.
“On the one hand, non-COVID-19 treatments and diagnoses are being delayed and put on hold. At the same time however, in the case of the large number of EDS sufferers for example who account for as much as 3% of the population, at a time of increased stress through enforced self-isolation the need for us to be able to connect with them and show that they are not alone becomes more important than ever,” he says.
As a result, Hogan is certain that the new ambassadorial appointment is timely in furthering the charity’s goals. “Ashleigh’s unique drive and experience will enable us to reach important new audiences and potential donors who, like us, want to make a real difference to people’s lives.”
To see the video song, ‘Worlds Apart’, which will feature in ‘The Dark Horse’, visit www.facebook.com/951789524976686/posts/1721519598003671/?vh=e&d=n To-date, the video song has achieved over 200,000 plays.
The press release accompanying the charity’s ambassador announcement can be found here.
EDS Awareness month#10forEDS Campaign!
May 2020 - Mind Body EDS Charity is celebrating Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month!
On average it takes over 10 years for a diagnosis of EDS or HSD. To help raise awareness this month, we want you to get involved by participating in our campagin #10forEDS
-> Do 10 - challenge yourself to an activity or hobby e.g. doing 10 press-ups, meditating for 10 mins, cycling/running/walking 10km, baking 10 cupcakes, juggling for 10 seconds, painting/sketching for 10 mins - get creative!
-> Donate £10 - or whatever you can afford to help EDS and HSD sufferers to our Virgin Money Giving Campaign page: http://uk.virginmoneygiving.com/fund/10forEDS
-> Nominate 10 - share on social media your #10forEDS (like the image above) and choose 10 friends to challenge themselves!
By participating in our campaign, not only will you have fun, but you will make a positive impression on many EDS and HSD sufferers lives by helping spread awareness whilst fundraising for Mind Body EDS charity.
To find out more and keep updated about our campaign, visit our Instagram and Facebook page! You can also help spread awareness by sharing the info-graphic below.
Fundraising Success at Charity Quiz Night!
🌟MIND BODY EDS CHARITY QUIZ NIGHT🌟
We’d like to say a BIG thank you to all those who came and supported @mindbodyeds Charity Quiz Night on Saturday 8th February 2020! An evening full of brain-boggling questions, laughter, delicious Sri Lankan Curry, and an incredible selection of Raffle and Silent Auction Prizes! The charity event was a HUGE success and raised the equivalent of funding at least 10 individual private consultations for a diagnosis of EDS!
Thank you to all volunteers, Tilford Village Shop Sri Lankan Curry and all donations towards helping our charity make an impressionable difference to the lives who suffer from Ehlers-Danlos syndromes.
We are most grateful to the following sponsors who kindly donated prizes: @chelseafc @thejockeyclub @steamdreamsrailco @silentpoolgin @lauramercier @jessicakohnmakeup @jomalonelondon @saskiaamor @nandosuk @gigglingsquid @sohowhiskyclub @knightsofmiddleengland @frankgreen_official @thefoodmedic @davidlloydfarnham @oliverbonas @starbucksuk @ebbflowyoga @sweatybetty @b_ndstore @livias @emshelx @thesculpturepark @colourenergyworks @aromatherapy.works @orvis_farnham @waitroseandpartners The Haslemere Clinic
Mind Body EDS spreads awareness in Edinburgh!
Wow! what a response at The Ehlers Danlos Society’s Psychological & Emotional Health Conference in Edinburgh, Scotland on Saturday 2nd November 2019.
The day was full with over 200 people attending including EDS specialists, doctors, charities, patients and families. It was fascinating to learn the links with mental health conditions and Ehlers-Danlos syndromes, all potentially linked to Orthostatic Intolernace. It will be interesting to see how this biological link evolves...
Thrilled to see such a successful turnout for an important aspect of co-morbid mental health conditions among the chronic illness community. Doubly thrilled to meet and leave an impression on more fellow EDS zebras in the UK and spreading awareness of our charity’s mission!
Mind Body EDS attends and sponsors its first Ehlers-Danlos Society Global Learning Conference in Nashville, TN
What an incredible opportunity Mind Body EDS had to participate and sponsor in this years Ehlers-Danlos Society Global Learning Conference in Nashville, Tennessee, USA!
We had two representatives go on behalf of our charity (our Founder and a Volunteer) to raise awareness of our charity’s mission, network with worldwide specialists and patients, as well as be educated with the most up-to-date findings of the Ehlers-Danlos syndromes. Mind Body EDS were the only UK registered charity who supported the event.
As a charity, we are very proud to have been able to support the The Ehlers-Danlos Society whilst being the only UK EDS charity in attendance. We learnt such an extensive amount of education in EDS, and participated in two different research studies looking into the genetic type for hEDS, and the affects of local anaesthesia on EDS patients.
We’d like to thank our volunteers, patients and specialists we connected with at the conference and hope to see y’all next year in Scottsdale, Arizona, USA.
#ehlersdanlossyndrome #eds#hypermobilitysyndrome #hsd #heds#veds #chronicillness #charity#donate #edsawareness #spoonie
Congratulations Alex for cycling from London to Amsterdam for Mind Body EDS!
On Sunday 22nd June 2019, Alexander McCormac arrived in Amsterdam completing his cycling journey from London riding over 604km over four days.
Alex said, “We did it! Amazing, exhausting experience but well worth it, and wrapped up with a beer on an Amsterdam canal before dinner with the team. Unforgettable.”
Thank you so much Alex for supporting our charity and thank you to everyone who showed their support on social media, by cheering him on and by donating! To date, he has raised £1,555 which is 77% of his fundraising goal! For anyone who still wants to donate and help us get to 100%, the link is here: https://uk.virginmoneygiving.com/AlexanderNororiMcCormac
Congratulations George for running the Vitality 10k for Mind Body EDS!
On bank holiday Monday, 27th May 2019, George Dodson completed the Vitality London 10k in 59 mins 9 seconds! Thank you so much to for running to support Mind Body EDS and to everyone who cheered on, donated, and supported George and our charity. We have raised 98% of the fundraising goal and would love to make it to 100% so for anyone who would like to donate and help us reach that goal, please donate here: https://uk.virginmoneygiving.com/GeorgeDodson
#MindBodyEDS #AGatewayofHope #Vitality10k
John helps fundraise over £20,000 by running the London Marathon 2019!
John Thompson running past Tower Bridge Cheer Point. Photographer @agbwalker
Huge congratulations to our incredible London Marathon Charity Ballot runner, John Thompson for completing his first Virgin Giving Money London Marathon!
Being our first year apart of the London Marathon, we are so proud of him and his efforts and to date has fundraised over £20,000 for Mind Body EDS!
John was 2 minutes ahead of his goal time (3hr35) until he hit 32km. John suffered from excruciating spinal pain causing him to stop running. Luckily this was at our Limehouse Cheer Point where our strong 10 Mind Body EDS volunteers helped hydrate and provided support by giving him a pep talk to cheer him on. Eventually he got back into his stride, the searing pain alleviated and John finished in 4:04:35!
We are so grateful to our cheer point volunteers throughout the course helping spread awareness of our charity and most importantly, provide the moral support John needed to get him over the finish line.
Our Virgin Giving Money page is still active and we are continuing to receive donatioMns. If you’d like to show your support and make a real difference to EDS patients lives, please donate here: https://uk.virginmoneygiving.com/john-thompson-MindBodyEDS
Our warm-heart thanks to our sponsors (JHI Associates, Apex, and Peachey & Co LLP) , donors, cheer point volunteers, and volunteer photographers @agbwalker and Frankii Lock in helping make our first London Marathon an incredible success!
#MindBodyEDS #AGatewayofHope #ThanksaBillion #LondonMarathon2019
Southampton University Medics raise almost £1000 for Mind Body EDS
Thank you to Southampton University Medic Societies for helping fundraise for Mind Body EDS. We are so grateful as a charity for your continued support in helping us fulfill our mission of being a ‘gateway of hope’ for Ehlers-Danlos syndromes.
The Bluetits Southampton Medics Netball Club held a charity fancy dress netball match and raised a total of £212!
The MedSoc Monty held their annual dance show in April and Founder, Rochelle Sylvester, says:
It has been an absolute pleasure helping to fundraise for so many charities over the last few years, especially Mind Body EDS. I am so proud that we have managed to successfully promote body confidence whilst raising over £750 for Mind Body EDS.
If you would like to hold a fundraising event or partake in a fundraising race etc. please get in touch with our charity by emailing info@mindbodyeds.org.uk