News

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!

USA champion running for Mind Body EDS in London Marathon 2019

IMG_6713.JPG

Every year, over 35,000 runners take part in this once-in-a-lifetime experience and we are excited to announce that Mind Body EDS secured a Charity Ballot place for the Virgin Money London Marathon 2019 - we know these are like gold dust! This year, London Marathon will be celebrating #ThanksaBillion breaking a fundraising record of £1 billion since it began in 1981!

John Thompson, 55, who is a Grand Slam gold medal champion at the Run Houston Race Series (winning all five races in record times), and winner of USATF Gulf Coast Region Grand Prix Series, will be running and fundraising for the charity this year. UK-born and with a PhD in Physics from Sussex University, he is now resident in the USA and works in the Oil & Gas industry. Out of office hours he has led an exceptionally energetic outdoor lifestyle and recently started running trail, track and road races from 5km to 24-hour endurance events. Always setting new targets for himself, at the 2019 London Marathon his goal is to be in the top-three USA-based runners in his age group. At the same time he is “delighted to be able to help raise the profile of Laura’s extraordinary new charity, which has immediately hit the ground running in helping those like her who are suffering with this hugely-debilitating illness.”

There are so many ways you can contribute to helping John cross the finishing lines - whether that’s through sponsoring/donating or why not help us by organising a fundraising event?

So please support Mind Body EDS on our Marathon journey by visiting our Virgin Money Giving page (https://uk.virginmoneygiving.com/john-thompson-MindBodyEDS), certain in the knowledge that your generous donation will change the lives of those suffering from this crippling and potentially fatal condition.

Follow John’s training for the London Marathon by visiting his Facebook page where he will be posting regular updates: @JohnThompsonLondonMarathon2019MBEDS

If you have a place in the London Marathon this year, why not give yourself a stronger purpose to run whilst making a real positive impression on the lives of those suffering with Ehlers-Danlos syndromes by choosing to fundraise for Mind Body EDS. We are welcoming all those with London Marathon 2019 ballot places to run for us, so please get in touch with us here.

#MindBodyEDS #AGatewayofHope #LondonMarathon #ThanksaBillion

Mind Body EDS joins #GIVINGTUESDAY movement

GivingTuesdayTemplateDesign2.jpg

Mind Body EDS has announced it is taking part in this year’s #GIVINGTUESDAY campaign. The campaign, which began in America, is an antidote to the mass consumerism of Black Friday and aims to get people thinking of others in the run up to Christmas. #GIVINGTUESDAY is a global day of giving happening on Tuesday 27th November 2019 that harnesses the collective power of individuals, communities and organisations to encourage charitable giving and celebrate generosity worldwide.

We need your help to share and spread the word! Here is your chance to make a real positive impression and difference to the lives of those affected by Ehlers-Danlos syndromes by making a donation or pledge to our charity #GiveToMindBodyEDS.

Find out more by visiting www.givingtuesday.org.uk

New charity provides ‘gateway of hope’ to EDS sufferers

The press release accompanying the launch of our charity can be found here.

 

Note to Editors: About Mind Body EDS

Mind Body EDS is a new charity aimed at raising awareness amongst the public and medical community about the range of Ehlers-Danlos syndromes. Its goals include providing financial support to individuals and families to enable effective early diagnosis and treatment, as well as towards EDS research. EDS is a group of genetic conditions affecting the body’s connective tissue resulting from collagen defects. Collagen essentially acts as a ‘glue’ keeping the body from falling apart and is responsible for supporting the skin, tendons, muscles, ligaments, blood vessels, bones, eyes and vital organs and therefore affects the entire body. Common symptoms are: dislocations/subluxations of joints, chronic pain and fatigue, easy bruising, aortic and/or organ ruptures, palpitations, digestive disorders and other comorbidities. For more information, please visit the website at www.mindbodyeds.org.uk