2023-2024
# **BRCA+ Chat Annual Report**
**Navigating Gene Mutations Together**
BRCA+ Chat 2023-2024
## **BRCA+ Chat**
1st April 2023 to 31st March 2024
**BRCA+ Chat has been a light in a dark place. A safe space to converse with others about everything from postsurgery bras to different consultations and what different surgeons say. What on earth did women, and men for that matter, do before BRCA+ Chat?!? Baffles me.**
49 Station Road, Polegate, East Sussex, BN26 6EA BRCA+ Chat is a Charitable Incorporated Organisation governed by a CIO Foundation Constitution and overseen by a Board of Trustees Registered Charity Number 1195944
## **Table of Contents**
|**Table of**
**Contents**||
|---|---|
|**Executive Summary**|1|
|**Objectives**|2|
|**Statutory Declaration on Public Benefit**|2|
|**Activities, Achievements & Performance**|3|
|**Campaigning**|10|
|**Fundraisers**|11|
|**Future Plans**|12|
|**Governance & Financial Review**|14|
BRCA+ Chat 2023-2024
## **Executive Summary**
**Our third year as a charity has been one of growth and consolidation to build our community of people navigating gene mutations together. Over 300 people attended at least one of our in-person or online events and nearly 3,000 people now follow our social media platforms. Using recognised social media projections, we estimate that we reach at least five times that number across the UK and the world.**
**The trustees met ten times in the year, including a face-to-face Annual General Meeting in September when we reviewed our progress for the previous financial year and determined our aims for the coming year. The highlights for this year have been the significant increase in the number and range of activities and events we were able to provide; the engagement of a virtual coordinator to support our work, a revamp of our website with the support of a student intern, the introduction of yoga sessions to support emotional well-being, higher profile media engagement and the recruitment of more volunteer BRCA+ Babes to act as local champions.**
BRCA+ CHAT TRUSTEES TAKING A BREAK FROM A STRENUOUS BOARD MEETING
**Our aims for the coming year are to establish a more structured BRCA+ Buddy network, to increase our organisational support resources, introduce more robust data analysis to evidence our impact and to increase collaborative working with healthcare professionals.**
**At the end of the year, we increased the number of Trustees to seven with Lucy Hume, who brings valuable fundraising experience joining the Board. We will be conducting a board skills analysis to identify where there are gaps in the knowledge and expertise of the current Trustees so that our recruitment of further members can be targeted to support even more effective governance.**
**The lived experience of our Board members, BRCA+ Chat Buddies, BRCA+ Chat supporters and those that follow our website, newsletter and social media posts remains at the heart of all we do and guides us in our activities, our plans, and our future ambitions. Comments from some of these will be present throughout this report.**
THANK YOU SO MUCH š„¹ LOVE THIS CHARITY AND ALL YOU HAVE DONE WHICH IS INCREDIBLE!! CANNOT WAIT TO MEET YOU AND MORE BRCA BUDDIES AND CONTINUE TO CONTRIBUTE
TO THIS AMAZING COMMUNITY!! šš„š„³
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BRCA+ Chat 2023-2024
## **Objectives**
**Our vision is to build a world where peopleās lives are not determined by their gene mutations.**
**We will work towards this by:**
- **Providing emotional, mental and practical support for those affected by BRCA and other gene mutations within the United Kingdom**
- **Providing education in the United Kingdom on arising out of or pertaining to BRCA and other gene mutations**
- **Creating awareness and campaigning around issues arising out of or pertaining to BRCA and other gene mutations including, but not limited to, better access to genetic testing within the United Kingdom**
## **Statutory Declaration on Public Benefit**
**The trustees declare that they have complied with their duty to have due regard to the guidance on public benefit published by the Charity Commission in exercising their powers or duties.**
FINDING A SUPPORTIVE COMMUNITY OF PEOPLE WHO UNDERSTAND WHAT YOU ARE EXPERIENCING HAS BEEN
REALLY SIGNIFICANT FOR MY EXPERIENCE. FACT LED ADVICE AND INFORMATION IS VITAL, ESPECIALLY TO THOSE NEWLY DIAGNOSED. THE
MASTECTOMY GALLERY IN
PARTICULAR IS FANTASTIC!! IāM CURRENTLY PRE SURGERY AND ITāS GIVING ME THE CONFIDENCE TO MAKE DECISIONS AND FEEL MORE COMFORTABLE WITH REALISTIC EXPECTATIONS. THANK YOU FOR ALL THE WORK YOU DO!
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BRCA+ Chat 2023-2024
## **Activities, Achievements & Performance**
## **Overview**
**A massive difference for us this year has been the engagement of our amazing co-ordinator, Alison who has somehow been able to make sense of and organise our various files, data and us. This has made a huge contribution to our work and enabled our inspirational Chair, Christen to continue to devote her own time to BRCA+ Chat, but in a more productive way, (although pictures of BRCA+ cats and dogs continue to distract her)!**
**Christen and the lovely Lisa, our co-founders, have worked incredibly hard during the year to significantly increase our social media and newsletter presence. This is where most people first engage with BRCA+ Chat and the lively, informative and life-affirming posts are what makes BRCA+ Chat accessible and inclusive.**
I GET MOST OF MY INFORMATION HERE AND I TRUST IT BECAUSE ITāS REAL PEOPLE GOING THROUGH A REAL EXPERIENCE.
**Our website continues to be important in promoting our messages of love and positivity to people living with or affected by BRCA type gene mutations. Our mastectomy gallery is a unique resource for anyone facing breast surgery and we are so grateful to the many individuals who have shared their images. This year, we have been very lucky to have had the support of Serena, through a digital student placement, to help us update and improve the website.**
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BRCA+ Chat 2023-2024
**We have received loads of fabulous supportive messages as well as requests for information and advice. Whilst we are clear that we are not medical experts, cannot provide guidance, and that we can only provide information based on the experiences within our community, we will always try to signpost to accredited sources and highlight new research and news when it is published.**
**Keep doing what youāre doing. Connecting people is the best thing.**
YOU HAVE ALL THE INFORMATION, FACTS, PREVIOUS EXPERIENCES, OPTIONS, RISKS AND OUTCOMES, ALL IN ONE FRIENDLY PLACE.
## **Activities**
## **Peer Support Groups**
**At the heart of our charity are humans with lived BRCA+ experience supporting others at earlier stages in their BRCA+ journeys. Our fantastic BRCA+ Buddies are all inspirational peer models who share their own journeys and experiences to inform and give hope to others. In addition to that one-to-one support, we have also held four online peer support groups this year with more than 60 people attending.**
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PSGs
4 60
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BRCA+ Chat 2023-2024
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Nottingham
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## **Meet Ups**
**We held ten āin real lifeā meet ups during the year attended by 98 people. We have eight āBRCA+ Babesā who act as regional coordinators, and we now have coverage in all major UK cities except Cardiff and Belfast. Feedback from these has been incredible and through them we have recruited more Buddies and then been able to link Buddies up with others in their areas to build local BRCA+ communities.**
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We are planning even more during the coming year!
Meet Ups
10 98
Brighton
Leeds
Bristol
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Newcastle
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BRCA+ Chat 2023-2024
**Help with all the not-so-small details that do not get picked up during medical care such as lifestyle, preparing for surgery, what to bring, tips to recover, what to expect in general at different points of your journey. Providing a link to others who experience the same situation is so valuable. Providing a com assionate but also fun environment to discuss is p very important as well to help with perspective as the volume of medical appointments can be daunting. I also look to the community to keep me posted in case there are changes on research / things we should be aware of. Thanks again for the fantastic job!**
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BRCA+ Chat 2023-2024
## **Information Sharing**
**We held four webinars and published eight blogs for subjects which were as diverse as the images in our mastectomy gallery ā menopause, HRT, breast surveillance, male breast cancer, nipples or not, tattoos, types of reconstruction or not, etc. The ones relating to dating and sex post mastectomy continue to be particularly popular. Where possible, we engage trusted experts to lead these sessions.**
**The webinars always spark lots of discussion and we are continually identifying new subjects based on the feedback we receive.**
BY BEING A SAFE SPACE WHERE ANYONE WHO HAS FOUND OUT THEYāRE CARRYING THE MUTATION CAN HAVE A CONVERSATION AND NOT FEEL JUDGED ABOUT THEIR DECISIONS. HELPING PEOPLE UNDERSTAND THAT THERE IS A LOT TO CONSIDER, AND SURGERY BRINGS ITS OWN CHALLENGES AND CONSEQUENCES.
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TALKS
4
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**We have strived to make our online communications even more engaging and eye catching and have developed a communications strategy to support funding applications to grants and trusts.**
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BLOGS
8
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**This is where BRCA+ Chat has been just amazing as it has shown such a wide variety of outcomes in every different body type. It also provides answers to questions that you canāt really ask your surgeon, like where to get the best bras, chat about drains (I only found out I would have drains in from reading through BRCA+ Chat Instagram!) Itās just an amazing resource that isnāt possible for the NHS given its constraints and its priorities.**
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BRCA+ Chat 2023-2024
10 300
## **Newsletters**
**Our newsletters are an important way of keeping people informed about our plans, upcoming events, and news about everything BRCA+. We sent out ten newsletters during the year and have nearly 300 subscribers.**
KEEP DOING WHAT YOU'RE DOING NOW: PROVIDING INFORMATION AND NETWORKING OPPORTUNITIES. SEEING OTHER PEOPLE'S STORIES AND KNOWING MORE WHAT TO EXPECT FROM PEOPLE WHO'VE BEEN THROUGH IT IS SO VALUABLE.
## **Building our Community**
**Being told that you are BRCA+ positive can feel overwhelming and lonely. Our BRCA+ community is built on sharing messages of hope, knowledge, and experiences. The better we can do this, the more our community will grow, and no one will be alone. We have plans to recruit even more BRCA+ Buds and ensure we network together across the UK and beyond to help people meet the challenge of their gene mutations and live amazing happy and healthy lives.**
**Itās the only support network I feel a part of. I get scared as my surgery is in a week, but I just go into the Instagram page for BRCA+ and feel like Iām reassured that everything will be okay. These powerful, beautiful women are getting me through a really difficult time in my life with my mother having cancer. Christen is like a guardian angel, and I got to meet her at a BRCA+ meet up and it was like meeting my hero. Her posts had just made so much sense in a dark place I was in. To post through the good and bad times must be hard but I feel confident in myself now for my operation and know when I wake up, I have BRCA+ chat there for me.**
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BRCA+ Chat 2023-2024
## **Well-being**
**We know that the emotional impact of having a gene mutation can be as hard, if not harder, to bear than the physical challenges. Therefore, we were thrilled to be able to introduce yoga sessions with Rosie for our BRCA+ Chat community.**
**We have decided that we want to expand this area of work and look at what other well-being activities we can introduce. Watch this space!**
SEEING SURGERY OUTCOMES IS VERY HELPFUL AND INFORMED A LOT OF MY DECISION MAKING. IT'S NICE TO KNOW OTHERS ARE GOING THROUGH SIMILAR STRUGGLES, ESPECIALLY WHEN I FEEL A BIT MENTAL FOR CHOOSING TO REMOVE A (CURRENTLY) HEALTHY BODY PART. I ALSO APPRECIATE THE NICE NONMEDICAL STUFF LIKE YOGA THAT ALLOWS ME TO STILL GET INVOLVED AND FEEL SUPPORTED EVEN WHEN IāM FEELING TOO OVERWHELMED ABOUT BRCA TO DISCUSS THAT SIDE OF THINGS.
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BRCA+ Chat 2023-2024
## **Campaigning**
**We continue to support a variety of campaigns highlighting cancer awareness and genetic screening. Christen, our Chair, has given interviews on BBC local radio, filmed for Macmillan Cancer Support and been part of a Future Dreams and BRCA Project panel https://futuredreams.org.uk/. In the coming year we aim to build our media presence to highlight the need to better identify and support people with BRCA type gene mutations. We are also working with several healthcare providers to support more preventative and holistic approaches.**
**And we also met a giant boob!**
CANCER SURVIVOR JOANNA CALLAGHAN, GOODBYE BREASTS! "ART INSTALLATIONā WITH BRCA+ CHAT PREVIVORS
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INSIDE THE GIANT
BOOB!
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BRCA+ Chat 2023-2024
## **Fundraisers**
**We would not have been able to do any of this without the brilliant people (and fluffy friends) that support us, give such wonderful feedback and raise money for us to develop and grow our services.**
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London 50k Ellieās 10k Louās Ultra
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**This year our biggest fundraisers have been: London 50k Trek, Ellieās 10k, Lou's Ultra Marathon and The Ripley Raffle. The funds they have raised has been amazing. However, we are just as grateful to the numerous individuals who have contributed individual amounts to our charity.**
**No matter how much your contribution, the difference you make is incredible.**
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Ripley Raffle
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BRCA+ Chat 2023-2024
## **Future Plans**
**Our plans for the coming year are to; strengthen our Buddy network and build our BRCA+ community, to develop our communications and branding to engage with more people affected by BRCA type gene mutations, to collaborate with healthcare professionals to bring changes to the way BRCA+ positive humans are supported, and to increase our events and activities.**
**Really good to see stories from others, support network as well as proper advice and guidance**
**I just wanted to send a little message to you guys to let you know how amazing this page is and all that you do for everyone. Iām a week post op preventative mastectomy and have found the stories so helpful and reassuring so far! Keep smashing it** š„°š¤
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BRCA+ Chat 2023-2024
**I adore the work you do. Iāve been to one support group, and I already feel so much better. I donāt have any women in my family with BRCA, so to find a community of some of the kindest women Iāve ever met has been so comforting. I was worried I would feel a bit weird if a lot of the attendees were older than me, but they were so open and honest about their journeys that I feel Iāve had a lovely chat with some distant aunts that have offered advice and just kindness and understanding that helped when Iāve felt really unsure of what this diagnosis will mean for me.**
**Thank you to all our supporters!!!**
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BRCA+ Chat 2023-2024
## **Governance and Financial Review**
## **Trustees**
Christen Williams (Chair)
Lisa Bancroft (Secretary)
Janine Duncan (Treasurer)
Alex Williams
Kate Biles
Eleanor Howie (resigned 21.11.24) Lucy Hume (from 2.11.2023)
## **Bank**
Metro Bank
## **Recruitment and Appointment of Trustees**
The Trustees are recruited through word of mouth or BRCA+ Chat advertising. The Trustees conduct an annual audit of the Board to identify where new Trustees with specialist skills or knowledge can benefit the charity. Prospective Trustees are interviewed by at least two members of the Trustee Board and then invited to attend a Trustee meeting to introduce themselves and their reasons for wanting to be a Trustee to the current Board members. A vote of the existing Trustees is then taken to confirm appointment.
Trustees are inducted by use of Charity Commission Trustee resources, introduction to the charity by Trustee Chair, Secretary and Treasurer and resources from charity infrastructure organisations.
## **Statement of the Charity's Policy on Reserves**
Cash at bank at 31.03.2024 was Ā£20,614 in unrestricted funds. The Trusteesā policy on reserves is to hold enough reserves to cover dissolution of the charity. This is reviewed annually. They are confident that the charity has enough funds to cover any dissolution costs.
## **Details of Any Funds Materially in Deficit**
The Trustees declare that the charity had no funds which were materially in deficit at the date of the statement of assets and liabilities.
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BRCA+ Chat 2023-2024
## **State of the Charityās Finances**
Thanks to the efforts of our many supporters who have raised funds for us our reserves have doubled in the past year and the Board has made plans in the coming year to use these funds to meet our objectives by budgeting for admin and specialist support services to provide more comprehensive support for our beneficiaries.
## **Restricted Funds**
The charity did not receive any restricted funds.
## **Designated Funds**
We did not receive any designated funds during the year.
## **Particulars of Any Outstanding Guarantee Given by the Charity**
The Trustees declare that the charity has given no guarantee where potential liability is outstanding at the date of the statement of assets and liabilities.
## **Particulars of Any Outstanding Debt**
The Trustees declare that the charity has no outstanding debts which are secured by an express charge on any of the assets of the charity at the date of the statement of assets and liabilities.
## **Declaration**
The Trustees declare that they have approved this report and authorised that it be signed on their behalf.
Christen Williams
January 2025
15
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