THE ENDOMETRIOSIS FOUNDATION
Trustee Report 2020-2021
The Endometriosis Foundation Last amended 03/05/2021
Charity name
The Endometriosis Foundation
Other names the charity is known by
Women With Endometriosis
Registered charity number
1178525
Registered charity address
601 Prince Avenue
SS0 0JQ
Name of registered trustees
Sir David Amess
(MP for Southend West)
Dr Masahide Kanayama
(Endometriosis Specialist)
Dr Joseph Davis
Reproductive Endocrinologist)
CEO
Miss Carla Cressy
The Endometriosis Foundation Last amended 03/05/2021
About us
The Endometriosis Foundation (also known as women with endometriosis) is dedicated to raising awareness, informing, and supporting people affected by Endometriosis. Working inclusively with various medical professionals and our members to provide practical advice and emotional support to all those in need, striving continually to further our cause for greater clarity and information around Endometriosis.
Our main goal is support and give guidance to those affected by Endometriosis. Helping people access the care and treatment they need at the right time. We are a foundation made up of people who have experienced Endometriosis enabling us to provide tailored support and advise in a compassionate manner, alongside raising awareness of the condition and its symptoms and educating students about Endometriosis.
Our Vision
To create a better future where Endometriosis is recognised and understood and where the effects of living with Endometriosis do not limit a woman or girl’s ability to live a full and productive life. Our vision is a future where women are empowered to make their own choices, whether that is to have a family, study, to travel or to have a career.
The Endometriosis Foundation Last amended 03/05/2021
Our History
The Endometriosis Foundation was founded by former model Carla Cressy from Essex, England, who despite suffering from most of the obvious signs of Endometriosis from the age of just 13, for years her symptoms were dismissed by a handful of doctors and wrongly diagnosed with various other conditions.
In January 2016 at aged 25, Carla was diagnosed with severe stage four endometriosis and a frozen pelvis, during an emergency two-part operation to save her life. Carla’s late diagnosis resulted in irreversible organ damage, involving multiple organs and sadly, infertility.
Since her diagnosis, Carla has endured multiple medical and surgical treatments to help manage her condition, including two laparotomies (open surgery), four laparoscopies (keyhole surgery), medical induced menopause (and various other hormone treatments) and an unnecessary appendicectomy.
On October 6[th] , 2020, during the COVID-19 global pandemic, Carla endured further major surgery which entailed re positioning of her bladder, the insertion of ureteric stents, a radical hysterectomy (removing her cervix, uterus, ovaries, and fallopian tubes) and part of her bowel, leaving her with an ileostomy (stoma) and forcing her into surgical menopause at just 29 years old.
As a consequence of her suffering, Carla decided she wanted to make a difference. She campaigned to raise awareness of Endometriosis and the importance of an early diagnosis amongst young girls in education. Her campaign was supported by Sir David Amess, MP for Southend-West to which on March 14[th] , 2018, The Endometriosis All-Party Parliamentary Group (APPG) was formed.
Carla’s statement – “Having never heard of endometriosis prior to my diagnosis and having never received guidance or support outside of my family and friends, I know first-hand how challenging and isolating this journey can be. I wanted to create a charity to raise awareness, to influence legislation and to provide the much-needed support to others that I never had
The Endometriosis Foundation Last amended 03/05/2021
Our Yearly Achievements
Sadly, due to our founder Miss Carla Cressy undergoing major surgery in October 2020, and the outbreak of Coronavirus this year we have been unable to do all that we had set out to do. However, that said, with restrictions beginning to ease and with Carla having recovered and gaining back her strength, we are exciting to get back to work on the many goals we set out to do.
Support Groups
Our monthly support groups have continued to run remotely during 2020-2021 and we also now include a National Support Group
Group counselling
We launched our pilot group therapy program in collaborating with The Women’s Consortium charity in aid to work towards strengthening valuables lives.
Completing our Real-life stories campaign
We have completed the editing process of our Real-life Stories video campaign which we are looking to launch in the summer of 2021 in support of our awareness campaign.
The launch of our ambassadors’ program
We have begun our application process recruiting volunteer medical ambassadors dedicated to our cause.
Online webinar planning
We have organised and planned to hold two online webinars throughout the month of March 2021 to mark Endometriosis awareness month.
Me, My Hormones & My Fertility
Me, my hormones & my fertility is a webinar of talks by a multidisciplinary team of experts discussing the affects endometriosis can have on fertility and learning ways to cope with menopause.
With guest speakers confirmed –
Ms Vidya Seshadri – Consultant Gynaecologist Specialist in Reproductive Medicine and Surgery Head of CRGH research & Clinical development
Dr Rebecca Lewis – GP with specialist interest in menopause
Power Up For Change
Power Up For Change is a webinar of talks by a multidisciplinary team of experts discussing the affects endometriosis can have, the treatments available and the recent findings from the Endometriosis APPG
The Endometriosis Foundation Last amended 03/05/2021
With guest speakers confirmed –
Sir David Amess – Chair of the Endometriosis APPG and Trustee with The Endometriosis Foundation
Mr Christian Bekker – Associate professor Consultant Gynaecologist & Subspecialist in Reproductive Medicine
Mr Alfred Cutner – Renowned expert in severe Endometriosis – Past Chair of the BSGE & BSUG
Mr Joel Naftalin – Expert in gynaecological ultrasound
Structure, governance, and management
The Endometriosis Foundation is a UK based charity committed to the promotion and protection of good health in young girls and women affected by Endometriosis. The foundation provides reliable information and emotional and physical support to all those in need. Ensuring those affected by Endometriosis receive the care and treatment they need at the right time
Our Strengths
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Our board of directors are equipped with personal understanding and knowledge of the condition based on real life experiences whether they are personally affected ~~themselves~~ or a family member
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Our Trustees ~~exist of~~ include an MP; and internationally qualified specialists in both Endometriosis and Infertility ~~and an MP~~
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Our social media platforms are very well established ~~o~~
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Our online support groups ~~grow by thea~~ re increasing daily
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We have a trusting and supportive relationship with our members and volunteers
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We run a monthly national online support group
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We have recently created a pool of Endometriosis, infertility, mental health, and menopause specialists who are willing to help us achieve our goals.
Our Weaknesses
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No office space
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Lack of financial resource and income
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Delay in the launch of our website due to lack of communication with our builders as a result of covid restrictions
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Delay in the launch of the charity due to covid restrictions
The Endometriosis Foundation Last amended 03/05/2021
Opportunities
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To establish partnerships across the UK and overseas to help raise our profile and support people in need further afield.
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To establish partnerships with employers and schools to help introduce our project schemes to raise awareness of Endometriosis and its symptoms and to help us reach more people in need
Our feedback
I can’t remember how I came across The Endometriosis Foundation, but I am so glad I did. I
have learnt so much about Endometriosis from other people being a part of the group and I am still learning things now.
It’s so nice to know that you are not on your own and there are people out there going through the same things that you are. Also having people to talk to no matter what time of day it is has really helped me.
Kayleigh
(Community member)
The Endometriosis Foundation has given me so much support throughout my journey to diagnosis. Before I came across this charity, I felt very isolated with my symptoms. The charity’s Facebook page has enabled me to connect with my women who sadly suffer from this condition. I have made friends, a community that I feel a part of and for this, I am so grateful.
I am genuinely in awe of the charity founder and ambassadors who have their own battles yet are
always happy to offer help based on their past experiences. You have given me so much hope for the future
Amarni
(Community member)
The one thing that really got to me when it came to joining The Endometriosis Foundation
was that there are so many women who just understand. You can go through years of trauma
and not being believed and to find a group like this was the most important thing in my journey.
Whether it’s advice on what to do, where to go
or just to talk its so important to have that support
Lisa
(Community member) The Endometriosis Foundation Last amended 03/05/2021
Our future plans
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To continue extending our areas of support by setting up additional monthly support groups
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To launch a fully functioning website including an online support group
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To secure funding to enable us to continue holding information and awareness events across the country
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Continue educational workshops to help students recognise what is normal and what is not around menstruation
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To continue planning and officially launch our 2021 awareness Campaign
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Finances
Income
Rhianna’s Music Event
£2,389.00
GoFundMe
£90.49
Hope’s Calendar Sale
£42.35
The Found Forina
£200.00
Total income
£2,721.84
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The Endometriosis Foundation Last amended 03/05/2021
Expenditure
Online support, subscriptions & Services (including e-mail subscription, web support, smart survey, data analysis, Dropbox, Adobe, Zoom) £1,228.43
Phone Services £262.49
Stationery & Postage £28.99 Design & Printing £241.88 Home Office Costs £360.00 Accountancy Fees £75.00 Bank Charges £120.00 Total Expenditure £2,316.79
Excess of Income Over Expenditure £405.05
Total Expenditure £2,316.79
Excess of Expenditure Over Income (£1,170.13)
The Endometriosis Foundation Last amended 03/05/2021
Declaration
The trustees declare that they approve of the trustees’ report above
Signed on behalf of the charity’s trustees
Signature
Full name
Position (e.g. Trustee, Secretary, Chair etc.)
Date
Charity registration number 1178525
The Endometriosis Foundation Last amended 03/05/2021