(&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