2020-12-31-accounts

Trustees’ Annual Report and Accounts for the period ending

31[st] December 2020

The Ectodermal Dysplasia Society, Unit 1 Maida Vale Business Centre, Maida Vale Road, Cheltenham, Glos. GL53 7ER England Tel: [phone] Mobile: [phone] www.edsociety.co.uk Email: [e-mail]

Ectodermal Dysplasia Society

Trustees’ Annual Report for the period 1[st] January – 31[st] December 2020

Charity number 1089135

Unit 1, Maida Vale Business Centre, Maida Vale Road, Leckhampton, Cheltenham, GL53 7ER

Trustees

Stuart Atkiss Stephen Ayland Nick Briggs Paul Collacott - Chairman Sharon Cooper Scott Gallacher Simon Lee-Jones Larissa Pelham Diana Perry - Chief Executive and Secretary Andy Ponting Alan Waller - Treasurer Mandy White Martin Williams

Irish Representative

Elaine Aylward

Administration

Sue Beard – Accounts and Website Management Jaye Dix – Family Liaison Danielle Gue – Social Media/Benefits

Bankers

HSBC Bank, 2, The Promenade, Cheltenham, Gloucestershire, GL50 1LR Scottish Widows Bank, 67, Morrison Street, Edinburgh EH3 8YJ

Constitution

The Ectodermal Dysplasia Society was formed by a Constitution dated 14[th] July 2001. The Ectodermal Dysplasia Society currently has about 662 contacts. Trustees are appointed at the Annual General Meeting and hold office for a term of up to 3 years. Trustees are able to be reappointed after their period has ended.

1

Objectives

The Ectodermal Dysplasia Society is a charity dedicated to improving the health and wellbeing of people whose lives are affected by the Ectodermal Dysplasias. We work together with people who have Ectodermal Dysplasia, their families, researchers, health and other professionals to develop and share expertise, increase awareness and understanding, and assist with the day-today management of Ectodermal Dysplasia.

Although the Ectodermal Dysplasia Society is based in the UK, we support individuals, families and professionals worldwide.

Full details of the Ectodermal Dysplasia Society and current activities can be found on the website at www.edsociety.co.uk.

Mission (Why we exist)

The Ectodermal Dysplasia Society aims to promote awareness and understanding of the Ectodermal Dysplasias by providing detailed information and practical advice to those individuals and families affected by Ectodermal Dysplasia and to the medical professionals, local authorities and those who support them in living life to the full.

The Ectodermal Dysplasia Society aim to:

• be the first port of call for all those seeking information on the Ectodermal Dysplasias

• provide immediate support to individuals and families who have received an initial diagnosis or who suspect Ectodermal Dysplasia may be the cause of the symptoms

• provide personalised support to individuals and families affected by Ectodermal Dysplasia and provide personalised guidance to authorities in the UK (e.g. schools, Social Services) seeking to understand how to manage the effects of Ectodermal Dysplasia on individuals and families in their community

• raise the awareness of Ectodermal Dysplasia within the medical profession and other community officials in the UK (e.g. health visitors, social workers) in order to promote early diagnosis of babies and children with life-threatening symptoms of Ectodermal Dysplasia (e.g. overheating, breathing difficulties, feeding difficulties).

We have an established Medical Advisory Board of professionals who have the relevant skills to assist us in these aims.

Vision (What we want to be)

Our vision is that every individual and family affected by Ectodermal Dysplasia is equipped with the knowledge needed to manage Ectodermal Dysplasia effectively and live life to the full; and that medical professionals have the information and understanding they need to support those affected.

The Ectodermal Dysplasia Society seeks to raise funds to provide support services, equipment and grants to families affected by Ectodermal Dysplasia in the UK.

2

Strategy (How we will make this happen)

The work of the Ectodermal Dysplasia Society will be guided by 6 strategic objectives;

• 1) Communication - To make available information that is clearly written and easy to understand on the different Ectodermal Dysplasias, together with practical advice on how to manage their effects.

• 2) Membership Management - To build a solid membership database of both those individuals and families affected by Ectodermal Dysplasia, and of those medical professionals with an interest in or experience of treating such individuals and families.

• 3) Liaison & Support - To liaise with individuals, families, professionals and members of the Medical Advisory Board with the aim of providing personal support and advice to those affected by Ectodermal Dysplasia.

• 4) Contact Network - To build relationships between individuals and families affected by Ectodermal Dysplasia to encourage mutual practical and emotional support.

• 5) Raise Awareness - To promote awareness and understanding of Ectodermal Dysplasia to both the medical profession and general public.

• 6) Fundraising - To raise funds to support the Ectodermal Dysplasia Society in its work to provide services, equipment and grants to individuals and families affected by Ectodermal Dysplasia.

Achievements in 2020

• School - Assisted parents and Schools in creating School Care Plans specific to the day to day management of Ectodermal Dysplasia; attended school meetings

• Disability Living Allowance – assisted families in completing Disability Living Allowance (DLA) and Personal Independent Payment (PIP) application forms; wrote appeal letters, accompanied and prepared families for and attended tribunals

• Assisted families in obtaining a Blue Badge

• Assisted families in being re-housed

• Encouraged and assisted individuals to Fundraise

• Successfully raised money for new computers following our “computer crisis” appeal

• Successfully received a grant from the National Lottery

• Continued working on the International Ectodermal Dysplasia Network website aimed at medical professionals and support organisation leaders around the world

• Assisted countries to create their own support organisation

• Attended virtual Conferences to obtain information and bring awareness

• Attended the British Association of Dermatology virtual meetings

• Attended ERN and ePAG virtual meetings

• Attended EDIN virtual meetings

• Assisted families through our Support Fund

• Assisted EspeRare in the progression of the ER004 treatment therapy

3

• Gave Presentations to medical organisations

• Assisted families in finding Dentists who have experience of Ectodermal Dysplasia through the Dental network set up by one of the Medical Advisory Board members

• Produced Newsletters

• Continued working on creating a new up to date website

• Continued working on creating a web app for our youth with a graphics designer

• Promoted our published book “A Guide to Ectodermal Dysplasia”

• Promoted our published children’s book “Everybody’s Different”

• Continued working on the temperature regulation research

• Continue assisting in the creation of a temperature device

• Applied and received various grants

• Attended virtual meetings regarding “Appearance Matters”

• Assisted virtually in the creation of a “Distance Aware” badge rolled out to shops/supermarkets

• Began creating a new system to help our Incontinentia Pigmenti community

• Began creating a Disability Living Allowance Guide

• Worked with other Patient Support Groups towards giving a presentation at the BAD Annual Conference in 2021

• Worked with National Voices creating a heads of policy document

• Created a Personal Independent Living Allowance guide

• Began creating anti-bullying leaflets and guide

• Continually updated our website regarding Covid-19 Government guidelines and information

• Worked continually from home and the office to support all our ED community during the Covid-19 pandemic and lock-downs

Policy on reserves

• Reserves are maintained at a level which ensures the Ectodermal Dysplasia Society’s core activity can continue during a period of unforeseen difficulty.

• A proportion of reserves are to be maintained in a readily realisable form.

• The calculation of the required level of reserves is an integral part of the Ectodermal Dysplasia Society’s planning, budget and forecast cycle and takes into account:

• Risks associated with each stream of income and expenditure being different from that budgeted

• Planned support and research fund

• The Ectodermal Dysplasia Society’s commitments

The reserves that we have set aside provide financial stability and the means for the development of our principal activity. We intend to maintain our reserves at a level which is at least equivalent to approximately 75% of our annual expenditure. We intend to use the reserves in the following manner:

4

• a Support fund for the benefit of our members

• b Annual Event fund

• c Liabilities in the event of closure, redundancy, rent and utility bills.

The Trustees annually review the amount of reserves that are required to ensure they are adequate to fulfil our continuing obligations.

No funds were in deficit during the period.

Income and expenditure

The main source of income is through donations and fundraising. Total receipts in 2020 were £42,812.55 (2019: £65,289.98). We are extremely grateful to our members and others associated with the Ectodermal Dysplasia Society for the generosity of their giving.

The main expenditures are wages and rent, which enable the infrastructure of support and counselling provided by the Ectodermal Dysplasia Society. Total outgoing resources in the year were £48,201.23 (2019: £49,926.21). Direct support to individual members is also given and, while allowing the provision of essential equipment such as air-conditioning units, humidifiers, wigs, travel expenses for attending schools and tribunals, etc., represents a lesser proportion of the Ectodermal Dysplasia Society’s outgoings than is applied to verbal advice and moral support.

In 2021, the Ectodermal Dysplasia Society is planning to fund:

• A portion of the Temperature Research programme

• Family members’ applications to the Support Fund

• An annual event

• Conferences

• Presentations

• Supporting members through the process of DLA/PIP applications, appeals and tribunals, school meetings, Blue Badge applications and appeals, etc.

• Continued support of individuals, families and medical professionals

• Completion of the ED Society’s website and the international EDIN website

• New age-appropriate web app specifically aimed at children

• Attending training courses for social media, fundraising and benefits

• Applications for grants

• Create Best Practice Leaflets with the assistance of the MAB

• Create a fundraising team

• Completing the Disability Living Allowance Guide

Diana Perry Chief Executive and Secretary

1[st] May 2021

5

Ectodermal Dysplasia Society

Financial Statements

Accounting policies

• 1 The basis of preparation is receipts and payments, with the exception of gift aid, which is recognised as due at the time of the related donation.

• 2 Fixed tangible assets with an initial value greater than £1,000 are capitalised.

• 3 The General Fund represents funds not subject to any restrictions regarding their use and are available for the general purposes of the charity. The Support Fund represents funds which must be used in accordance with specific restrictions imposed by donors or which have been reserved for particular purposes.

6

ECTODERMAL DYSPLASIA SOCIETY INCOME AND EXPENDITURE ACCOUNT For the year ended 31 December

ECTODERMAL DYSPLASIA SOCIETY INCOME AND EXPENDITURE ACCOUNT For the year ended 31 December	ECTODERMAL DYSPLASIA SOCIETY INCOME AND EXPENDITURE ACCOUNT For the year ended 31 December	ECTODERMAL DYSPLASIA SOCIETY INCOME AND EXPENDITURE ACCOUNT For the year ended 31 December	ECTODERMAL DYSPLASIA SOCIETY INCOME AND EXPENDITURE ACCOUNT For the year ended 31 December
2020 2019 Notes £ £ £ £ INCOME Interest 66.31 74.97 Donations 3 13,927.92 16,054.16 Gift Aid 3,216.26 4,280.18 Members fees 1,569.52 1,381.70 Fundraising 11,145.87 18,297.68 Christmas Party & Raffle 993.00 2,329.35 Merchandise sales 1 317.47 488.37 Grants 10,643.00 21,000.00 Other income 4 933.20 1,383.57 Total incoming resources 42,812.55 65,289.98 EXPENDITURE Wages 31,204.19 29,321.96 Postage and Stationery 1,256.44 991.12 Telephone 746.46 877.18 Computer related costs 2,989.01 2,166.41 Committee members' expenses 200.00 3,543.21 Insurance 399.76 381.81 Christmas Party & Raffle 96.00 2,186.25 Sponsorship 1,800.00 - Support for members 2 402.96 2,309.15 Rent 7,200.00 7,200.00 Fund Raising Expenses 1 787.00 333.00 Advertising 500.00 109.40 Other expenditure 619.41 506.72 Total resources expended 48,201.23 49,926.21 Net incoming resources before losses on revaluation of overseas funds -5,388.68 15,363.77 Gain on revaluation of overseas funds 3 246.16 -292.33 Net expenditure / incoming resources -5,142.52 15,071.44 Total funds brought forward 86,758.65 71,687.21 Total funds carried forward 81,616.13 86,758.65 Movements in Reserves Support Fund General Fund Total Support Fund General Fund Total Opening Balance 17,675.36 69,083.29 86,758.65 19,955.68 51,731.53 71,687.21 Incoming resources 1.38 42,811.17 42,812.55 28.83 65,261.15 65,289.98 Resources expended -402.96 -47,798.27 --48,201.23 -2,309.15 -47,617.06 -49,926.21 Revaluation 246.16 246.16 -292.33 -292.33 Balance Carried Forward 17,273.78 64,342.35 81,616.13 17,675.36 69,083.29 86,758.65
			15,363.77 -292.33
			15,071.44 71,687.21
			86,758.65
			Total 71,687.21 65,289.98 -49,926.21 -292.33
	17,273.78 64,342.35	81,616.13 17,675.36 69,083.29	86,758.65

7

ECTODERMAL DYSPLASIA SOCIETY STATEMENT OF ASSETS AND LIABILITIES As at 31 December

ECTODERMAL DYSPLASIA SOCIETY STATEMENT OF ASSETS AND LIABILITIES As at 31 December
FIXED ASSETS Tangible assets CURRENT ASSETS Gift Aid due HSBC Current Account Scottish Widows Account Irish Funds (see note 3) Cash in hand CURRENT LIABILITIES Creditors Accrued expenses REPRESENTED BY General Fund Support Fund	2020 £ £ - 2,564.93 9,351.28 65,151.90 4,547.99 0.03 81,616.13 - - - 81,616.13 64,342.35 17,273.78 81,616.13	2019 £ £ - 3,621.04 8,695.12 70,086.97 4,355.49 0.03 86,758.65 - - - 86,758.65 69,083.29 17,675.36 86,758.65
			86,758.65
			69,083.29 17,675.36
			86,758.65

These accounts were approved by the Trustees at the Annual General Meeting held on 1[st] May 2021

Trustee

Trustee

8

Notes to the accounts

1. Merchandise sales represent funds raised through the sale of goods promoting the Society. Fund raising expenses include £198.00 (2019: £333.00) relating to the cost of these goods.

2. Amounts paid from the Support Fund comprise £402.96 (2019: £988.86) in direct support of Members. Additionally, in 2019 a subsidy of £1,320.29 was given for the running expenses of the Christmas party in 2019.

3. The Irish Funds comprise funds held in the Republic of Ireland for the benefit of Members there, but are formally part of the Society’s funds. Net expenditure for the Irish Funds in the current year amounted to £53.66 (2019: net expenditure of £50.78) and the closing balance was £4,547.99 (2019: £4,355.49). Amounts in Euros have been translated at the year-end rate of 1.1182 (2019: 1.1814) Euros to the Pound. The gain on revaluation of funds of £246.16 (2019: loss of £292.33) represents the change in value of the Irish funds resulting in the movement in the Euro exchange rate between the end of 2019 and 2020.

4. Other income in 2020 includes £479.00 refund in respect of a faulty computer. In 2019 other income included £1,126.76 reimbursement of Committee member’s expenses principally by the British Association of Dermatologists and Findacure.

5. There were no outstanding debts or guarantees made by the Ectodermal Dysplasia Society at 31[st] December 2020 (2019: nil).

9

EXAMINER'S UNQUALIFIED REPORT (FOR A NONIOMPANY CHARtrYi INkpernlent eM¥mlner's rtport to tyustees ol tt E¢tothe￿I typl•sl• 5o¢lety Rel. No. IU9135 l ￿POrt on the accounts of the Trust for the Year eNled 31" Oecember 2020. whKh are set out rm the attsched pase Resperti¥e re$r￿1￿lItIeS of irustees and emaminer The chariWs trusi¢eJ are r￿M￿ll￿t fiythe prepaffli￿ of the •c(ounts. The chafTWs trustees ¢onslder that In audf Is noi reoulred for th15 year under 5eaion 144t21 of ihe Chafftle5 Att 2011 Iihe 2011 Artl and that an Independent examlnatlon15 needed. It is my resptylslb￿rty to: eumlne ihe Kccyjnts uThler seairy 145 of ihe 2011 AL1.. io Idkjw the proteduies laid down In the wral Dlrertkns gi¥en by the Charity CommIssl￿ under section 145lsllbl of the 2011 Art." and to State wfiether particular matteT5 come to my attenifjon. My exarnlnat5on was carrled out in accordance wbth the 8enwal Dlrertlons 8fvn bythe Chafify CommissiL￿. An examination inclLKles a wew of the accountin8 records kept by the chafity and • comparison of the accounts presented with those records. It atso Includes consideratlon of any u¢Trusual Items or dIsC￿SU1es in the accounis and seeking explanatlons from as irustee5 concernlng any such matter5. The procedures undertaken do not pn)wde am the e4rf1en￿ that would be required In an audlt and consequtndy t)0 oFMnion is gwen as io wh￿he1 the accounts prLiseni a true and falr v6ew' and the report Is1Smiied to those matters set out in the staiement below. In ion with my examination. no matter to my attention.. 111 whith me re•scthb* au5e to beli￿￿ thai in any materlal respect the rewlrtments.. keep accountlng records kn •tcord•nce with Secti(￿ 130 of the 2011 Act., and to prepare ac(ounts which accord with accounbry records and compty wirh the accountlng reovlrements of the 2011 Act have not met; or 121 to which. in my opinion. attenti¢m slthld be dr•wn in order to ￿•ble a pffjper understsndini of the accounts to be reached. Name". Wllllam Perry Relevant professional qualllk4tl)n or boty. ACIMA Address.. 143 Sallsbury Aven￿. Chehenham. Ghx GLSI 3DG Date: zz131z, io