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Mast Cell Action is a Charitable Incorporated Organisation registered in England and Wales with the Registered Charity Number 1164917
## **Mast Cell Action**
**Annual Review & financial statements 1 Apr 2021 - 31 Mar 2022**
**www.mastcellaction.org**
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## **Contents**
**Welcome 3 Charity Information 4 Report of the Trustees 5 - 13 Report of the Independent Examiner 14 Statement of Financial Activities 15 Balance Sheet 16 Notes to the Accounts 17 - 20**
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## **Welcome to our Annual Review**
Mast Cell Action was formed to fill the vacuum of information and support available to those living with Mast Cell Activation Syndrome. Over five years we have established the charity as that go-to source of help, and every day more people discover us and benefit from our resources.
This continual increase in demand for what Mast Cell Action offers has confirmed our raison d'être, but also made it clear we have to grow if we are to meet our community's needs. This realisation has meant that we have had to create and implement a growth strategy, alongside provision of support plus our work with the medical establishment.
2021 has seen the start of this as we seek to broaden our funding and capability.
2022-3 will be the year we look to build the charity into a more substantial and ‘professional' organisation, capable of helping the increasing number of people who need us.
**Chris Wood, Founding Trustee**
**Joy Mason, Volunteer Communications and Fundraising Lead**
This has been an incredible year for Mast Cell Action, the amazing success of Scott Fisher's fundraiser will allow us invest in the growth of the charity and therefore provide the opportunity for us to reach and support many more people affected by MCAS.
As the world opens up again after Covid, we are reminded of members of our community who have shared with me that they have felt less isolated in a world unable to physically connect - as this is how daily life can often feel for many people affected by MCAS. The variety of different triggers which can affect individuals can leave them unable to join in with many 'normal' activities.
Providing opportunities for our community to connect is vital to the wellbeing of those living with MCAS and we hope that we can continue to build on those that we already offer.
As we move forward into the next financial year, we are confident that we can build on the successes of previous years, developing more resources and expanding our support through focused projects and activities to make impactful change for our community.
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## **Mast Cell Action**
**(A Charitable Incorporated Organisation)**
**Legal and administrative information**
## **Charity number 1164917**
**Registered office**
6 Willes Terrace Leamington Spa CV31 1DL
## **Trustees**
Gawain Paling Chris Wood
Eric Grounds (appointed 10/06/2022) Jacqueline Fisher (appointed 07/07/2022) Ruth Slater (resigned 10/06/2022) George Hughes (resigned 24/04/2022)
**Bankers**
National Westminster Bank
**Independent Examiner**
TT Business Services Limited 3 Burwell Close Rochdale OL12 6DQ
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## **REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 March 2022**
The Trustees have pleasure in submitting the Report and Accounts for the year to 31 March 2022
## **Structure, Governance and Management**
## **Nature of organisation**
Mast Cell Action (Charitable Incorporated Organisation) was registered with the Charity Commissions of England and Wales (Registration Number 1164917) in December 2015.
## **Our aims and objectives**
Our overall objective is to improve the lives of people affected by mast cell disorders. We will achieve this by:
- providing support for all those affected by mast cell activation disorders
- bringing the Mast Cell Activation Syndrome (MCAS) community together with one unified voice
- working with the medical community to help ensure patients with MCAS receive the best care possible
- promoting increased research into conditions related to mast cell activation lobbying for universal awareness, diagnosis and treatment of MCAS
- educating the wider community, helping to reduce stigma and improve lives for those living with MCAS
## **Principal activities during the year to 31 March 2022**
The charity's activities during the year broadly fell into three categories:
- creating and further developing a number of initiatives providing support to those affected by MCAS
- progressing a number of research and communication projects, designed to provide evidence and knowledge concerning MCAS to the medical community
- building the organisation's capabilities, better to enable us to fulfil our mission
"Thank you so much for providing this resource and the many others available. We would like to say a big thank you to Mast cell action for the Casper the Chameleon resources. Both myself and my son have MCAS. It explains it in a way that’s easy to understand for children and has resources that empower him to talk about feelings and how to describe and discuss symptoms without feeling embarrassed. We have shown the book and the cards to other family members in order to help them understand more about this complicated condition" - Casper resource pack recipient
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## **Developing our support for the MCAS community**
- we continued to grow and nurture our online support groups.
- we developed a series of well-being resources to support mental health and other aspects of living with mast cell disease.
- our developing social media platforms helped to reduce isolation in the MCAS community through supportive posts and by encouraging connection.
- we developed support and information materials to be disseminated through a new YouTube channel.
## **Research and communication projects**
We continued to develop connections with the medical community, particular initiatives being:
- attending the British Society for Allergy and Clinical Immunology Conference with an information/educational exhibition stand
- setting up a paediatric advisory board of doctors
- contributing to various initiatives, official papers and projects including:
- a “Patient lived experiences” research project in conjunction with the University of Oxford
- a paper evidencing and exploring the links between MCAS and long Covid, with Dr Bethan Myers
"Thank you mastcellaction for ALL of your posts! This diagnosis is so isolating, no one understands our day to day life. Most doctors don’t even know how to treat us. So having the support and suggestions here are much appreciated. Thank you for bringing this community together. ❤ " - Instagram follower
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## **The impact of our work**
The Trustees are delighted to have received consistent positive feedback and messages of thanks from the community. During this financial year we are proud to have:
## Sent 39 Casper resource packs
"I just wanted to take a moment to say a heartfelt 'thank you' from all our family for your lovely chameleon book and discussion cards. We're in a tough place at the moment where both our sons have crashed with a huge flare up of their mast cell disorder. And your book was there to help us open the conversation with them about why their bodies are feeling the way they are and to help them find the words and space to tell us how it feels for them."
## Responded to 542 emails
Built our social media support groups to include 3393 people
Had 49,000 visitors to our website with 5990 individual downloads of our resources
Had 386,000 post impressions on our social channels with 772 posts Built our social media followers to 6,932 with 2,531 of these new this year
We attended a 3-day BSACI conference, sharing evidence and resources about Mast Cell Activation Syndrome, giving out material and engaging with dozens of Healthcare Professionals
"I don’t usually do this, but I really appreciate everything you post. It’s been so helpful as I navigate MCADs. Your organisation is performing a vital role. I can only express my thanks for all the hard work that has clearly gone into your website and I suspect that this is just a reflection of all the work that goes on in the wider community in promoting an awareness of and assistance for people with mast cell disorders."
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## **Building the organisation’s capabilities**
It was apparent to the trustees that we needed to grow the organisation's capabilities, infrastructure and above all income to make real progress in supporting people affected by MCAS.
The main achievements in this area were fourfold:
## **1 Building a fit for purpose communications function**
- designing and implementing a communications strategy to plan how and when we engage with our community and what this engagement consists of
- creating a newsletter to allow us to share updates and key information
- redesigning and enhancing our website to ensure it was fit-for-purpose, giving us a platform to share information and resources and to offer support
- building our social media presence across all key platforms to reduce isolation in the MCAS community through supportive posts and by encouraging connection as well as raising awareness, promoting our services and allowing us to directly engage with those living with MCAS
## **2 Building our human resource**
- we identified and appointed initially as an advisor, Eric Grounds: an executive with 30 years of charity (and specifically fundraising) experience both within organisations and as a consultant.
we built our volunteering team from 12 to 21.
- at the end of the year when funds permitted, we appointed our first paid member of staff to address community engagement, volunteer management, resource development and communications.
- we established our intern programme, recruiting medical interns to support our research and medical communications projects
- we recruited and trained multiple volunteers to manage key functions such as communications
## **3 Establishing an effective fundraising capability**
It became clear that community fundraising would not raise the funds we needed to grow and fulfil our mission. Hence, we needed to raise additional funds beyond community fundraising to support the development of the charity and allow us to have a real impact for the MCAS community.
This in turn required that we:
- refined the necessary organisation and governance.
- started to define our needs and plans into logical projects in order to understand the funding that would be required to achieve these.
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## **4 Pursuing a major fundraising opportunity**
As a child, Megan had mild allergies to hay and tomatoes, suffering from anaphylaxis for the first time as a teenager. Now she is wheelchair bound, has faced death multiple times and is fighting for more awareness of her condition. Her allergic reactions are regular and intense and she has spent years in and out of hospital struggling to find answers.
The act of counting out the 27 pills his wife, Megan, has to take every day to manage her MCAS inspired Captain Scott Fisher to undertake the incredible challenge of completing 27 marathons in 27 days to raise money for research into mast cell diseases. Scott hoped to raise £27k but surpassed this by thousands raising an incredible £270k spanning two financial years.
We identified this as a major opportunity and committed resource and support to the initiative, which consequently over delivered, providing us with the basis for financial security and an initial platform for research.
Scott was featured on This Morning, BBC Breakfast and multiple other news outlets during his challenge. This not only helped to increase the donations to his fundraiser but gave a platform to the charity to raise awareness about MCAS and the vital work we do.
Scott continues to support Mast Cell Action and is already planning his next challenge.
"It took about two years of elimination testing to reach a diagnosis and nearly three to start treatments. The last three years have been unpredictable, reactive and emotional.
Mast Cell Action has provided direction to alternate specialists, provided resources and emotional support to my wife but also helped me on my fundraising journey by providing the framework and leg up to raise a large portion of money to help the cause".
Scott Fisher - Mast Cell Action supporter
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## **Looking forward to FY 2022/3**
During 2022 it is our intention is to pursue all three of the principal activity areas described above. Some specifics being:
- to extend our community engagement to ensure we understand the needs and priorities of those affected by MCAS through community surveys and planning for a community focus group
- to increase our capacity in order to deliver the resulting community initiatives through volunteers and interns
- to further develop our interaction with the medical community, building our advisory board and contunuing to engage with HCP's at medical conferences to further strengthen the board
The Trustees intend to diversify our income streams, specifically developing a grant funding programme to support specific projects which will have significant impact on the MCAS community.
"I just wanted to say to everyone thank you, this group is the only group I have truly felt welcomed into and the only one I know that no matter what problem I have there's always someone who will help me" - Support group user
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## **Risk management**
The Trustees have reviewed the risks to which a small charity operating with few employees is exposed. Appropriate procedures are in place to identify, monitor and review these risks on a regular basis.
## **Organisational structure**
The Trustees are legally responsible for the CIO. The Trustees meet at least four times annually.
## **Responsibilities of the Trustees**
Charity law requires the Trustees to prepare financial statements for each accounting year which give a true and fair view of the state of the charity and of its income and expenditure for the year. We are required to:
- select suitable accounting policies and apply them consistently
- make judgements and estimates that are reasonable and prudent
- state whether the applicable accounting standards have been followed, subject to any material departures disclosed and explained in the accounts
- prepare the financial statements on a going concern basis unless it is inappropriate to presume that the charity will continue in business
We are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and enable us to ensure that the financial statements comply with the Charities Act 2011. We also have a responsibility to safeguard the assets of the charity and to take reasonable steps to prevent fraud or any other irregularities.
## **Our aims and objectives**
To improve the lives of people affected by mast cell disorders
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## **Reserves policy**
The Charity is dependent upon donor and grant funding to finance its activities, which is subject to fluctuation from year to year. As a result, the trustees believe that the Charity should hold reserves to provide protection against such fluctuations and enable it to continue operating in all circumstances.
In light of significant income raised by Marathons for Mast Cell and the Charity’s growth plans, Trustees reviewed the reserves policy and concluded that it should keep in cash enough funds to cover:
- 6 months running costs of £50,000 based on expected turnover of c£100,000 from 2023/24.
- Designated funds of £100k for cash flow during 2023/24 in anticipation of further growth in activities and staffing.
- Designated funds of £150k to be used for future research into MCAS, in partnership with other research collaborators, in accordance with the purpose of funds raised by Marathons for Mast Cell.
Much time has been invested in developing the charity and strengthening our delivery. Mast Cell Action has established a series of projects which, if funded, will provide essential services and resources to the MCAS community. We expect community fundraising to continue to grow along with our expanding community.
The trustees acknowledge the opportunity to invest in faster growth, but recognise the imperative to maintain measured fiscal control. For a limited period, the reserves will appear to be out of proportion to operational needs. That position is likely to normalise as development costs rise and the charity tries to expand its revenue streams to match a significantly enhanced service.
There is currently a small amount of restricted funds which is ringfenced for the purpose that it was intended. All other current funds are unrestricted, but are designated as follows:
## **Historical summary of funds**
||**2022**|**2021**|**2020**|**2019**|**2018**|
|---|---|---|---|---|---|
|**Unrestricted - not designated**|£37,073|£21,532|£26,529|£21,465|£16,406|
|**Unrestricted - designated**|£250,000|£0|£0|£0|£0|
|**Restricted**|£3,200|£0|£0|£0|£0|
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## **Mast Cell Action**
**Annual Report Year ending March 2022**
Signed on behalf of the Trustees:
……………………………………………………….
**Gawain Paling Chair of Trustees Date:**
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## **Mast Cell Action**
Charity number 1164917
_(A Charitable Incorporated Organisation)_
## **Independent Examiner’s report to the trustees of Mast Cell Action for the year ended 31 March 2022**
I report on the accounts of the charity for the year ended 31 March 2022 which are set out on pages 15 to 16.
## **Responsibilities and basis of report**
As the charity's trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”).
I report in respect of my examination of the Charity’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
## **Independent examiner's statement**
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
- 1.the accounting records were not kept in accordance with section 130 of the Charities Act; or
- 2.the accounts do not accord with the accounting records;
- 3.the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair’ view which is not a matter considered as part of an independent examination.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
TT Business Services Limited
3 Burwell Close Rochdale OL12 6DQ
Date: 19.01.2023
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## **Mast Cell Action**
## **Charity number 1164917**
(A Charitable Incorporated Organisation)
## **Statement of financial activities For the year ending 31 March 2022**
||**Note**|**Unrestricted**
**funds**|**Restricted**
**funds**|**Year ended**
**31/03/22**|**Year ended**
**31/03/21**|
|---|---|---|---|---|---|
|**Income**
Income from generating funds:
Voluntary income|3|£289,321|£14,000|£303,321|£20,112|
|**Total income**||£289,321|£14,000|£303,321|£20,112|
|**Expenditure**
Charitable activities|4|£25,040|£10,800|£35,840|£25,289|
|**Total expenditure**||£25,040|£10,800|£35,840|£25,289|
|**Net movement in funds for the**
**year**||£264,281|£3,200|£267,481|£(5,177)|
|Total funds brought forward||£22,275|£0|£22,275|£27,452|
|**Total funds carried forward**||£286,556|£3,200|£289,756|£22,275|
**The Statement of Financial Activities includes all gains and losses recognised in the year.**
**The notes on pages 17 to 20 form part of these financial statements.**
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## **Mast Cell Action**
## **Charity number 1164917**
## (A Charitable Incorporated Organisation)
## **Balance sheet as at 31 March 2022**
|**Current assets**|**Note**|**31 March 2022**|**31 March 2022**|**31 March 2021**|**31 March 2021**|
|---|---|---|---|---|---|
|Cash at bank and in hand|6|£290,273||£22,275||
|Debtors|6|83||**-**||
|**Total**||**£290,356**||**£22,275**||
|||||||
||**Note**|**31 March 2022**||**31 March 2021**||
|Creditors: amounts falling due
within one year|6|£600||-||
|||||||
||**Note**|**31 March 2022**||**31 March 2021**||
|Net current assets|||£289,756||£22,275|
|**Net Assets**|||**£289,756**||**£22,275**|
|||||||
|**Funds**|**Note**|**31 March 2022**||**31 March 2021**||
|Restricted funds|7||£3,200||£0|
|Unrestricted funds|8||£36,556||£22,275|
|Designated funds|9||£250,000||£0|
|**Total**|||**£289,756**||**£22,275**|
**The financial statements were approved by the trustees and signed on their behalf by:**
**Gawain Paling** Chair of Trustees Date:
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## **Mast Cell Action**
Charity number 1164917
_(A Charitable Incorporated Organisation)_
## **Notes to financial statements for the year ending 31 March 2022**
## **1 Charity status**
Mast Cell Action is a charitable incorporated organisation registered in England and Wales, number 1164917. The registered office is 6 Willes Terrace, Leamington Spa, CV31 1DL.
Each of the trustees is liable to contribute an amount not exceeding £Nil towards the assets of the charity in the event of liquidation.
## **2 Accounting policies**
The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) in October 2019, the Charities Act 2011 and the UK Generally Accepted Accounting Practice.
## **Summary of significant accounting policies and key accounting estimates**
The principal accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied to all the years presented, unless otherwise stated.
## **Statement of compliance**
The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) - (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102).
## **Basis of preparation**
Mast Cell Action meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy notes.
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Charity number 1164917
_(A Charitable Incorporated Organisation)_
## **Mast Cell Action**
## **Notes to financial statements for the year ending 31 March 2022**
## **Basis of preparation**
Mast Cell Action meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy notes.
## **Going concern**
The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) in October 2019, the Charities Act 2011 and the UK Generally Accepted Accounting Practice.
## **Exemption from preparing a cash flow statement**
The charity opted to early adopt Bulletin 1 published on 2 February 2016 and have therefore not included a cash flow statement in these financial statements.
## **Governance costs**
These include the costs attributable to the charity’s compliance with constitutional and statutory requirements, including independent examination, strategic management and trustees’ meetings and reimbursed expenses.
## **Fund structure**
Unrestricted income funds are general funds that are available for use at the trustees' discretion in furtherance of the objectives of the charity. Restricted income funds are those donated for use in a particular area or for specific purposes, the use of which is restricted to that area or purpose.
|**3 Income**|**Unrestricted**
**funds**|**Restricted**
**funds**|**Total 2022**|**Total 2021**|
|---|---|---|---|---|
|Donations
Gift Aid Recovered
Other income|£245,871
£40,402
£3,048|£14,000
-
-|£259,871
£40,402
£3,048|£20,112
-
-|
|**Total**|£289,321|£14,000|£303,321|£20,112|
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## **Mast Cell Action**
## **Charity number 1164917**
## (A Charitable Incorporated Organisation)
## **Notes to financial statements for the year ending 31 March 2022**
|**4 Charitable activities**|**Unrestricted**
**funds**|**Restricted**
**funds**|**Total 2022**|**Total 2021**|
|---|---|---|---|---|
|Advertising and marketing
Charity management and administration
Conference and event costs
Consultancy
Expenditure on raising funds
Hosting services
Independent examination
Medical journal
Print, design, postage and stationery
Room hire
Sundry expenses
Telephone costs
Travel
Website design and maintenance|£5,395
£10,470
£1,440
-
£824
£103
£600
£1,444
£1,464
-
£1,086
-
£1,734
£480|-
-
-
£10,880
-
-
-
-
-
-
-
-
-
-|£5,395
£10,470
£1,440
£10,880
£824
£103
£600
£1,444
£1,464
-
£1,084
-
£1,734
£480|-
-
£592
£7,973
£8,655
-
-
-
£6,212
£854
-
£944
£59
-|
|**Total**|£25,040|£10,880|£35,840|£25,289|
## **5 Trustees’ remuneration and expenses**
As allowed by the Charity Governing Document, the trustees were reimbursed for expenses incurred on behalf of charitable activities.
|**6 Creditors: Amounts falling due within one year**
Trade creditors
**Total**|**Year ending**
**31/03/2022**|**Year ending**
**31/03/2021**|
|---|---|---|
||£600|-|
||£600|-|
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## **Mast Cell Action Charity number 1164917**
(A Charitable Incorporated Organisation)
## **Notes to financial statements for the year ending 31 March 2022**
|**7 Restricted Funds**|**Balance at**
**1 April 2021**|**Incoming**
**resources**|**Resources**
**expended**|**Balance at**
**31 March 2022**|
|---|---|---|---|---|
|General fund|-|£14,000|£10,800|£3,200|
|**Total**|-|£14,000|£10,800|£3,200|
||||||
|**8 Unrestricted Funds**|**Balance at**
**1 April 2021**|**Incoming**
**resources**|**Resources**
**expended**|**Balance at**
**31 March 2022**|
|General fund|£22,275|£289,321|£25,040|£286,556|
|**Total**|£22,275|£289,321|£25,040|£286,556|
## **9 Designated funds**
Designated funds of £100k for cash flow during 2023/24 in anticipation of further growth in activities and staffing.
Also, designated funds of £150k to be used for future research into MCAS, in partnership with other research collaborators, in accordance with the purpose of funds raised by Marathons for Mast Cell.
## **10 Controlling parties**
In the opinion of the trustees there is no single ultimate controlling party of the charity.
## **11 Taxation**
The CIO is a registered charity and is, therefore, exempt from taxation.
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**Validation is so important, thank you @mastcellaction for all the work you are doing to advocate for people like me.**
**I'm very glad for mast Cell Action's existence and work.**
**I'd like to see growth, and increasing emphasis on obtaining justice for sufferers in terms of better recognition, diagnosis and treatment and in the training and continuing education of medical personnel.**
**Thank you for existing as an organization. Just seeing the instagram stories about symptoms and triggers is validating and makes me feel supported.**