(&TEDct THYROID EYE DISEASE CHARITABLE TRUST Thyroid Eye Disease Charitable Trust Charity Commission No: 1095967 Office of the Scott15h Charltles Re8ulator No: SC042278 Trustees, Report to Charlty Commlsslon and Offic¢ of the Scottlsh Charllles Rezulator 2022123 Index Page Trustees, Report Annual Report Future Pollcy Statement Report of the Independent Examiner Recelpts and payments account Statement of assets and Ilabllitles Notes to the finandal statements
THYROID EYE DISEASE CHARITABLE TRUST Charity Commlsslon No: 1095967 OSCR No: SC042278 Trustees, Report 2022123 The Trustees of TEDct have prepared the Annual Report and Accounts In accordance wlth the rules of the Charity Commlsslon for England and Wales and the Office of the Scottish Charities Regulator. The objertlve of TEDrt Is to Infomi. educate and support those who sulfer from Thyrold Eye Disease. to educate and inform health professionals and to support research, development and understandlng of the treatment of Thyrold Eye Disease (IEW). Trustees Those who served as trustees of TEDrt in the financial year 2022123 were as follows: Dr Paul Cauchi Prof Colin Dayan Mrs Maureen Fletcher Prof Bijay Vaidya Mrjimmy Uddin Consultant Ophthalmologlst Consultant Endocrinolo81St Chairn)an of Board of Trustees Secretary to the Trustees Consultant Endocrinolo8lSt Consultant Ophthalmologist (from May 2023) Commlttee Members Mrs Gillian Barron Ms Violet Fazal-sanderson Ms Rebecca Ford Dr Helen Turner Ms Josian Phillips Mr Tony Davies Mrs Julia Hamilton Helpline Counsellor Specialist Nurse in Endocrino108y Consultant Ophthalmologist, Chair of Committee Consultant Endocrinologist (from August 20231 TED patient Hon. Treasurer Committee member & minutes secretary {from July 20221
THYROID EYE DISEASE CHARITABLE TRusr Trustee< report 202Z123 The Thyroid Eye Disease Charitable Trust ITEDrtI is registered with the Charity Commission for England and Wales under number 1095967 and in Scotland at the Office of the Scottish Charities. Regulator under number SC042278. TEDct aims to provide information. care and support to those affected by thyroid eye disease and to promote research into its causes and cures. It operate5 under a Trust Deed dated ioth December 2002. Registered address of the tharity clo Miss Rebecca Ford, Consultant Ophthalmolo8iSt Bristol Eye Hospltal Lower Maudlin Street Bristol BSI 2LX 8anklng Detslls Lloyds Bank plc PO Box 10 Andover SPIO IRE Charity Bank Ltd Fosse House 182 Hlgh Street Tonbrid8e TN9 IBE Structure, Governance and Management TEDct wa5 first registered in 1990 under the name Thyroid Eye Disease Association. In 2002 the or8anisation became a Charitable Trust with the Trust Deed dated 10 December 2002. Trustees are appointed when there are vacancies due to retirement OT Tesi8nation. It is expetted that Trustees will have an active interest in thyroid eye disease either in a professional medical or surgical capacity, or as a patient or fornier patient with the condition or a familial interest. Trustees are nominated by existing Trustees and appointment is confirmed by a majority vote of the existin8 Trustees. Most Trustees have previously been members of the Commtttee. Committee members are recruited from medical professionals. patients. fom)er patients and from other sources when specific skills are required. References are always sought.
ANNUAL REPORT 2022-23 The tharity is managed by a working committee which is involved In the day-to-day organisation of the charity and by the Board of TnJstees which has oversight of the working committee. The Board of Trustees ensures that the artivities and use of charity funds are in accordance with the purposes for which the charity was set up and in addition it ensures adherences to legal aspects including compliance with Charity Law both In England and Wales and In Scotland. TEDct ha5 no paid employees and all committee members and Trustees give theirtime on a voluntary basis. One committee member is also contracted, on a pald basis, to carry out work on the website and social media. Some administration is Outsourced to a paid "virtual assistanv. Membershlp We have over 550 member5 on our mailing list, and 1200 members of our Facebi)ok forum. These are mostly people afferted by thyroid eye disease, as well as some healthcare professionals. An increasing number are joining TEDct usingthe website. Membership has a degree of natural turnover as people develop then recover from TED, which has a typical timecourse of two to three years active disease which may be followed by many years of chronlc eye problems. Financlal Posttlon TEDct remains in a healthy financial position. Durin8 the financial year 2017118 a former member left a legacy of £374,097. In 2022/23 income wa5 £47.161 {including a further legacy) and expenditure £10,335. The trustees decided to commit some of the original legacy to developingthe chariWs website and learning material. The remaining monie5 from the le8acy have largely been invested, with the assistance of a firni of discretionary portfollo managers, in a medium risk portfollo avoidin8 tobacco, amis and munitions Stocks. Charlty Actlvitles 2022123 TEDct continues to focus on providing support to people affected by thyroid eye disease, raising awarene55 and understandin8 of the condition among medical professionals and supporting research into TED. Attendance at Conferences and other professlonal educatlon actlvlty. We have been attive In professional education in 2022-23. The second annual TEDct Prize was awarded at the British Oculoplastic Surgical Society conference for the best research presented on TED at the July 2023 meeting; the first award of this was at the June 2022 meetin8. A similar award for endocrinologists is planned for the British Endocrine Society meeting. and we hope this will stimulate young researthers interest in the condition. TEDct continued with its partnership with Fight for Sight to offer research grants towards research in Thyroid Eye Disease. There were no recipients in 2022123, but we hope to announce a new grant winner in early 2024 after receiving some good quality applications in 2023.
TEDct sponsored the development of an e-learning course to educate NHS professionals about TED. and this launched on the NHS e-Leamin8 for Health plarform in late 2023. The projert was led by our committee chair Rebecca Ford. wtth contributions from many ophthalmology and endocrinology professionals who generously donated thelr time and expertise. This means that there is now free online education about TED for all NHS health professionals and medical students. More information is available at https:l/vKtsvw.e- Ifh.org.uk/new-elearning-on-thyroid-eye-diseastrnow-available/. TEDct is also developing an open access textbook on TED to be developed with Springer Press. The open access model means that the charity will fund production of the book, whlch will be available free in an electronic format to anyone who wants a copy. This will allow high quality. Up-to-date infomation on TED to be shared worldwlde by all clinicians managing the condltlon. The first draft of the manuscript is expected to be ready in sprin8 2024, with publication date aimed at late 2024. Servlces provlded to TEDct members and to the general publlc Newsletter Once again only one newsletterwas sent to members during this financial year, due to the current small number of volunteers and the impact of the pandemic. However, TEDct continues to move towards a digital fonnat and many new articles have appeared on the website in 2022-23 covering topics of interest to members. Our newsletters and web articles provide an overrfiew of TEDct activlty. informatlon on thyroid eye disease and report5 on conferences attended, patients, experiences, research projetts and Patsent Information Meetin8S. The Helpline The Charity offers a helpllne, whlch people affected by TED can call for support and lay advice. It is advertised on the website and In the newsletter as well as on all TEDct Ilterature. Common reasons for calling the helpline include advice on finding a referral or specialist for TED, feelings of isolation and need to speak to someone who has experlenced the disease. The Helpline lends an empathetic ear to all callers and many find It an invaluable source of information and solace. 167 calls were received durin8 the financial year 2022-23. The service does not provlde specific medical advice but provides general support to people who often just want to talk to someone who understands what they are experiencing. but it can also help to direct patients on how to access advice from relevant healthcare professionals in their region. Social medio Our online Facebook patient support forum has grown amazingly in 2022-23. This now has over 1,200 members. The group is 'closed'. such that people can join by request only, after indicating why theywish to join and agreein8to abide bythe rules ofthe forum. Moderation is by committee members and a volunteer with prior experience in online moderation. The forum has been very successful in offering peer-tcFpeer sUPPOrt and linking people together who may not have had a chance to share experiences with others
affected by this relatively rare condition. Thread topi<s on the forum help the charity committee to understand which topics are important to people affected by TED. TEDct twitter and facebook has also provided a further plarform to disseminate information includin8 the COVID & TED FAQS. We have also launched a TEDtt Linkedln page in 2023, with the aim of publicising our professional education activlties. bursaries and grants. Patient Information Leoflets TEDct provide5 free Patlent Infomation Leaflets which contain generdl information on TED as well as contact details of our charity to both ophthalmology and endocrino108y departments at hospitals around the country. tt has also been translated into 4 other lan8uages by volunteer translators. Ponel of Medicol Experts TEDrt has a panel of ophthalmologlst and endocrinologi5ts- all either trustees or committee members-who answer patients, medical enquiries. We have formalised this into a Medical Advisory Board in 2023. Many of the common queries have been turned into 'Frequently asked questions, on our new website. Web51te We have contlnued to develop our website, whlch was re-designed in 2022 in collaboration with the web develop Vu. The TEDct website prowdes contatt details of the organisation, information regarding medical aspects of thyroid eye disease, news on any future events Including Patient Information Meetin8s. There are also useful link5 to other relevant organlsations. The TEDrt logo was a150 redesigned durlng the website overhaul, to glve us a more reco8nisable branding and modemise the image of the charty. Researth Grants No grants or awards We made durin8the year, but as above, a grant has been approved in collaboration with Vision Foundation {formerly Fight for Sight) and the awardee will be announced in early 2024. Each charity will contribute £7,5(YJ towards a 'pump-primin type grant to 8et projects started In TED research. TEDct Nurse/Health Professlonal Bursary Scheme TEDct offers a bursary of up to £500 to support education (course fees) or for travel/accommodation expenses or a combination of these. This bursary is aimed at nurses and other health professionals. In exceptional circumstances and WFth reference to the trustees, funding exceeding £500 will be considered. This has not been awarded Since the pandemic but we hope it will be taken up in 2024 as face-to-face courses and meetings return to normal. Improvlng quallty of care for patients with TED As in previous years. TEDct has played an actlve role in national initiatives to raise awareness of TED and improve the qualFty of the care for patients viith TED. The Chairman of TEDct. Dr Colin Dayan, is our representative on the Thyroid Eye Disease Amsterdam Declaration Implementation Group UK ITEAMeD UK). TEDct provided funding to the
TEAMeD initiative prior to the pandemic and will continue to do 50 as TEAMeD activitie5 recommence post-pandemiG Personnel Miss Gill Adams retired as a Trustee in 2022 after decades of service to the Charity as both Committee Member and Trustee. Miss loana Pereni and Dr Vassiliki Bravis stepped down from the committee in 2023. We have welcomed Mrs Julia Hamilton and Dr Helen Turner a5 new committee member5 and Mrjimmy Uddin as a new Trustee. Colln Dayan MA MBBS PhD FRCP Chalrman of TEDct Trustees Rebecca Ford BMBCh MA MRCP MRCSEd FROphth Chairman TEDct Committee FufuRE POUCY STATEMENT Membershlp Subscrlptlons Since the overall financial posttion of the Charity has improved due to a sijbstantial legacy belng received. TEDct is now free to join. As hoped, free membership has encouraged patients to join the or8anisation more readily and we will continue to operate under this model. Independent Flnanelal Management The Trustees and Committee benefit from independent finantial management. The majority of the legacy funds are invested in a diversified portfolio. The investment mandate precludes investment In the tobacco industry {due to the deleterious effects of smoking on thyroid eye disease) and in arms and munltions. Sodal Medla TEDrt has Twitter and Facebook accounts, and launched a Linkedln account in 2023. We hope that these forms of improved communication will enable the work of the charityto be more widely accessed by all interested parties. Posting or streaming videos from our patient information events should enable these to be seen by people affected by TED who cannot travel to face-to-face meetings. TEDct aims to improve uptake of our professional bursaries and grants, since educating healthcare professionals to better care for people with TED is a key part of our mission. and we hope that the Linkedln account will help with this. Collaboration wfth other related Patlent Support Groups TEDct plans to improve its collaboration with other PSGS, especially continuing our on80ing relationship with British Thyroid Foundation. To this end we are applying to become affiliated with the Society for Endocrinok)gy Patient Support Groups network.
Independent Examinerfs report to the trustees of the Thyroid Eye Disease Charitsble TN5t- Charity Commlsslon N 1095967 and Office of the Scottlsh Charity Register No. 5C042278 I report on the accounts ofthe charTty for the year ended 31 March 2023 which are set out on pages 8and9. Reswnsibilities of trustees and examiner The Charivs trustees are responsible for the preparation of the accounts. The trustees consider that an audit 15 not required this year under the regulations of the Charlty Commission for England and Wales and the Office of the Charities, Regulator in Scotland. An independent examination is required. As independent examiner l am responsible for examining the accounts following the regulations of the Charity Commission and the OSCR and for brin8ing any anomalies. irregularities or other partlcular matters that I have found to the attention of the trustees and to the regulatory bodies. Basls of Independent examlnerfs report My examinatlon V•75 carried out In accordan with the regulations of the Charity Commlsslon and the OSCR. An examination includes a review of the accounting CordS kept by the charity and a comparison of the accounts presented wth those cOrdS. It also includes consideration of any unusual item5 and, if found. an explanation from the trustees would be sought. Independent examlnerfs statement In connertlon with my examination, no matter has come to my attention. I have no cause to believe that accountin8 records do not comply with the regulations and rules of the Charity Commission and OSCR. The records, in my opinion. provide a ststement of the income and expenditure of the charity in a manner which can be readily understood. Slgnature: Nam•: Roland J Adamson Relevant profe$5ional qualificatlon or boty. FCA Date:
THYROID EYE DISEASE CHARITABLE TRusr RECEIPTS AND PAYMEpifs AccouP FOR THE YEAR ENDED 31 MARCH 2023 ReIPts. Membership subs¢riptK)ns, webinats and donations (see note 11 Bank interest Isee note 2) Investment income Legacy Isee note 31 2022123 2021122 £2,689.96 £499.70 £7,167.(Kl £36,804.65 £2,303.55 £199.11 £6,662. £0. TOTAL REIpTs £47,161.31 £9,164.66 Payments: TEAMeD LIK15ee note 4) and British Thyroid Foundatlon Grants and Awards Isee note 51 Fee to Royal College of Ophthalmologists for development of 4 learning modules Trustees, and Committee memberf expenses {see note 61 Stationery* postsge, telephone Insurance Isee note 71 Webslte development £396.07 £150.Q) £o.fy) £221.) £0. £12,ClXI.C £10.34 £503.83 £0. £3,870. £266.09 £0.00 £519.55 £0.00 £9.970.C() £199.08 £o.co £847.87 £4,050.91 Bank charges and subscription processin8 fees Administrative support (see note 8) Investment management fees & commi$5ions {see notes 9 & 10) £1,064.84 £4,073.37 TOTAL EXPENIXTURE £10,334.54 £27,558.41 SURPLUSI(DEFI(Jn OF RECEIPTS OVER PAYMENTS £36A26.77 1£18.393.75) STATEMENT OF ASSETS AND IIABIUTIES AS AT 31 MARCH 2023 31103123 31103122 Investment Portfolio with Rowan Dartin8ton {see note 9} Bank balance Ichortty 8ankl Bank balance (Lloyds Bank) £348,162.30 £44587.72 £9,864.50 £339,350.03 £44.088.02 £6,631.06 TOTAL ASSErs £402,61Q52 £390,069.11 SOURCE OF FUNDS Funds brought fon¥ard £390,.11 £398.015.92 Surplus/ldefitttl forthe year Investment gain IRowan Dartington) £36.826.77 (£24281.36) 1£18,393.751 £10,446.94 Funds carried forward £402.614.52 £390.069.11
NOTES TOThE FINAN(JALsfATEMEpirs l. Income of the charity is galned from membership subscriptions. webinar fees. donations, and occasional fundraising activities. A substantial legary from Mrs Valerie Stevens, of over £374.(KA). was also reiVed during the finanaal year 2017118. There are no restrictions on its use. The Trustees decided that the gacY should largely be invested. to provide an Income of around £5,(U) per annum. Consequent upon that legacy being received and the investment incorne arislng from it, Tru51ees decided to offer free membership in future. Some members, however, have continued to pay subscriptions. 2. A portion of the charivs cash reserrfes hos been deposited with Charty Bank. so as to earn some interest and to provide the drIty with some protection under the Financial Ser¥lces Compensation Scheme. 3. During the perlod a further le8acy. of £36,805, was received from the estate of Mr J Jenklns. 4. In 2015 the Thyroid Eye Disease Amsterdam Declaration Implementation Group IYEAMeD"I produced guidellnes for the mana8ernent of patients with thyroid eye disease. The Group runs projett5 to improve the patlent experience for people with the disease. Until March 2020, and again In October 2022, the charity made a financial contribution to the work of TEAMeD. 5. A prize of £150 was aworded for the BOPSS Conference poster competition. There were no grants or awords during the previous perlod. 6. The charFVs Trustees and committee members are volunteers but are permitted to claim for expenses inCurd. such as for travel to meetin8s or hire of venues for events. 7. Durin8 the perlod, there were no events. and hence public liability insurance was not necessary. 8. The charity ha5 no ernployees. but has engaged a 5elf*mployed part-time provider of administrative support. 9. A firm of discretlonary portfolio managers. Rowan Dartington, has been engaged to manage the charivs investment funds in a drversified portfolio which precludes investment in the tobètco industry. or in amis and munitions. The figure shown in the balance sheet is the market valuation as at 31A March 2023. 10. The investment management fees and commissions charged by Rowan Dartington have been treated as an expense.