22Q11 Northern Ireland Annual Report
For the year to March 31st 2023
Annual Report for year ended March 31[st] 2023
2022-23 was a quiet year for the charity, however there were still some notable events that impacted the community of those affected by 22q in Northern Ireland.
In May 2022 the annual ‘22q at the Zoo’ event returned, having been cancelled due to Covid in previous years, and at a new venue (the Ark Farm in Newtownards) as some attendees with mobility issues found Belfast Zoo too difficult. The event was a great success as several new families attended and met each other for the first time to discuss challenges and coping strategies common to those affected by 22q.
Gillian attended the 22q Ireland conference in Dublin in October 2022 to collect valuable insights from speakers and attendees affected by 22q, which she shared via the Facebook group.
Throughout 2022 new families in need of help continued to contact Gillian through the 22q11 Northern Ireland Facebook group and she was able to refer them to the 22q Transition Clinic at Belfast City Hospital and provide advice remotely even though she was not yet allowed to attend the clinic for face-to-face contact. Covid restrictions were thankfully finally lifted in early 2023 so Gillian could resume her role as volunteer patient coordinator, distributing information packs and direct support to all involved. The clinic continues to be an essential service for families living with 22q, providing specialist medical and psychiatric advice.
Mia Lowden joined as a trustee in January, 2023.
Public Benefit Statement
The trustees of 22q11 Northern Ireland confirm that they have complied with their duty under the Charities Act (Northern Ireland) 2013 to have regard to the Charity Commission’s guidance on public benefit and that the public benefit requirement has informed the activities of the charity in the year to March 31st 2023.
The trustees believe that all of our purposes satisfy both elements of the public benefit requirement, and that the activities in 2022-23 (detailed in the annual report) contributed to each purpose:
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To seek out information about 22q through conferences, relevant lectures and the World Wide Web in order to provide advocacy through dissemination of information to the public and clinicians in Northern lreland on symptoms and issues via lectures, articles, social media and information sharing via a dedicated website.
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To support and encourage people residing in Northern lreland who are affected by chromosome abnormalities including but not limited to 22q11.2 deletion, 22q11.2 duplication, Ring 22, 22q13 duplication, Mosaic 22q deletion, Mosaic 22q duplication, 22q distal deletion and Trisomy 22 through the provision of recreation or other leisure
time occupation for individuals, family and friends of those diagnosed with the objective of improving their quality of life.
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To raise the profile of 22q with local elected MPs, MLA's, clinicians, and all those involved in the lives of those living with 22q in Northern lreland.
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To raise the standard of care for those living with 22q in Northern lreland via improved health care services, employment and training, social and educational improvements.
Financial Review
Financial Performance
Fund-raising remained on pause after halting during the Covid lockdown. Fortunately there were sufficient surplus funds from pre-Covid years to pay for 22q at the Zoo.
The charity has no assets or liabilities.
Income
Only the small passive income stream from Amazon Smile supplemented the Charity’s funds in 2022-23.
Expenditure
£1369 was spent in total. The main cost was the event at Ark Farm, while there were also some expenses incurred by attending charity events.
Approved and adopted by a meeting ol the Irusteps on 6 January 20?4 and %igDed on their behalf. Gillian Cassidy Founder Reference and Administrative Details Charity Name 22q11 Northern Ireland also known as 22qNI Charity Number Registered Charity in Norlhem Ireland No 102573 Principal Address IOA Abbacy Road Ardkeen Newtownards BT22 1HH Charity Trustees as of March 31st 2023 Mrs Gillian Cassidy Founder Mr Anders Cassidy Treasurer Mrs Lorraine Stiti AdVal& and Siippotl Cooidinalor Miss Mia Lowden Truslee