Why we volunteer to run the London EndoMarch
The London EndoMarch is fast approaching and this year, it’s set to be bigger and better than ever before! We sat down with the team who make the entire day possible and asked them what we can expect from 2019’s march, what it’s like organising 500 people and what the day means for the cause.
Why is it important for people to come together for this march?
Sarah: It’s great opportunity for people to meet others that know and understand what they’re going through. We have marchers that met at the London March and have remained life long friends since!
Susie: Not only is it a great chance to meet other people, it is also an excellent opportunity to spread the word and tell people about endometriosis. We make a massive impact - a huge group of us wearing yellow of course get lots of attention and we often have people (of all ages, male and female) asking us to tell them more about endometriosis.
Helen: The atmosphere, the experience, the togetherness - and to raise awareness! Endometriosis can be a lonely and isolating disease so to be surrounded by hundreds of people who just “know” is such a therapeutic, magical thing.
Are there any key messages or themes behind the march?
Susie: The main reason we march is to unite together and raise awareness. It is shocking that the average time for diagnosis is so long. Awareness is key. If more people were aware of the condition, the average time for diagnosis could be much shorter.
Sarah: On social media, I like to encourage people to make banners and really use this opportunity to get their message out in the world!
Helen: As with any type of March, people will share what has impacted them the most, which is why we encourage the making of banners etc. so that people can own their experiences.
The Worldwide EndoMarch is approaching its 6th year to date. How long have you been volunteering and organising London’s march and how have you seen it grow over this time?
Susie: I was diagnosed in May 2014, just after the first EndoMarch. On seeing an advert looking for volunteers, I got in touch immediately and helped to organise the second EndoMarch in 2015 and have been volunteering ever since.
Over the last few years we’ve had more people who stop us and tell us that they have heard of endometriosis or that they know someone with it. I think this is a positive outcome of all the awareness raising that is currently happening.
Sarah: I’m on my fifth year of being on the organising committee of the March and every year the attendance gets bigger and bigger. It’s so rewarding to see how many people come out and to hear that they benefited from the day. It really is such a positive vibe seeing everyone in yellow!
Helen: I attended my first March in 2015. I had a MRI scan at midday and left the hospital to catch up with the March, that day honestly changed my life beyond my wildest dreams!
The registration numbers for the March have nearly doubled every year since it started. It makes us so proud to see our hard work taking off - but also sad that we’re still all having to campaign.
The Worldwide EndoMarch launched in 2014. Can you tell us about its mission, who’s behind the organisation and why it began?
Susie - The Worldwide Endo March was founded by Dr Camran, Dr Ceana, Dr Farr, and Azadeh Nezhat and Barbara Page in Palo Alto, California. They recognised that change was needed in the way endometriosis is diagnosed and treated and wanted to launch a global event to bring people together and raise awareness. It is a potentially crippling, whole-body chronic disease, affecting an estimated 176 million individuals around the world and topping the list as one of the most urgent, yet ignored public health emergencies of our era.
We EndoMarch because 176 million people with endometriosis demand and deserve better.
What’s it like organising such a big event? Can you offer us a peak into what it takes to organise the day?
Susie: I am lucky to be organising the event with two very lovely ladies and we work well together as a team. We have regular planning meetings (which is also a nice excuse for a catch up over dinner!) and make good use of WhatsApp to bounce ideas around.
Sarah: Planning normally starts around October/November where the route is one is the first things we try to tackle! We have to consider distance, access and any major events going on the city, as well as trying to incorporate great photo opportunities!
Alongside this, we have to get the sale of merchandise up and running (from an outside company).
Once we have everything in place, we open up registration and watch the numbers go up! Our publicity through social media is ongoing and we also respond to enquiries on a regular basis.
Helen: For us, we don’t realise what a big event it has become. We stay focused on what really matters to us; bringing people together to share their experiences, genuinely caring about them and raising as much awareness as possible. That’s what makes us tick!
What does it mean to you to be able to prepare for and witness this incredible event each year? What’s your favourite part of the day?
Susie: It's an incredible feeling knowing that we have organised such a huge event, bringing together so many people for a good cause. Some people travel for hours to be with us, some people are not incredibly mobile and others are there even though they are in pain or suffering. It really is quite humbling.
Sarah: Seeing the odd yellow hoodies on the tube is great, then getting closer to the starting point and seeing streams of yellow coming towards us is brilliant. Getting everyone together for that big group photograph cheering and waving banners, for me, is the point where we can pat ourselves on the back knowing we’ve done our job and got everyone there!
Helen: For me it’s giving people a safe and constructive space to vocalise their feelings, it’s like attending a massive support group!
I love hearing of friendships that are made on the day, and the atmosphere of understanding - everyone is so supportive of each other and quite often the conversations that I catch snippets of are inspiring/tear jerking/hilarious... nothing is off limits.
For those who have never attended before, can you tell us a little about what they can expect from the day?
Susie: We are expecting over 500 at the March this year. Everyone meets up in the given meeting point (this year it's in Embankment gardens) and we have a few speeches before we set off. The March is not a fast walk and we try and make it a manageable distance, as we know that not all sufferers are able to walk very far. It is always wheelchair and pushchair friendly, as we want to make it accessible to everyone.
Some people will come with friends, families, partners, dogs or even with their local support group. Others come on their own. Either way is absolutely fine. Once you meet up with us before we start you won't be on your own for long. We all march together as one so you will soon get to meet lots of new people.
Sarah: We encourage people to bring their friends and family if they’d like to, not only is it great support for them but also for their family to gain a better understanding of the campaign.
Helen: You can sing and shout, or simply walk along with us and take it in. You do as much or as little as you’re happy with, whatever you want to take from the day.
The London EndoMarch is taking place 23rd March, 2019, 12:00 PM to 3:00 PM in Central London. To register and for all other details, click here: https://www.eventbrite.co.uk/e/worldwide-endomarch-london-uk-2019-tickets-53917781536