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2023-03-31-accounts

DC Action Trustees Annual Report 2023

Trustees:

Willem Buckley: Trustee and Governance lead, additionally appointed as treasurer 2023

Hilary Longhurst: Trustee and Medical Advisor Jane Paxton: Trustee and Scientific Advisor Alice Buckley: Trustee, Website support.

Volunteers:

Inderjeet Dokal, Graeme Alexander, Tom Vulliamy: Medical/scientific advisors Shah Riaz & Paula Mason: Community reference group Wendy Adams: Parent advisor Mieke Buckley: assistant treasurer

Finances:

  1. Willem Buckley appointed as treasurer Oct 2023

  2. a. HL, JP and MB (treasurer) signed up as signatories for bank account.

  3. b. E-banking- working well.

  4. c. Tax returns up to date

  5. d. Barclays anti-money-laundering audit successfully completed

  6. Amazon smile has closed but www.thegivingmachine.co.uk still active – small receipts. TheGivingMachine Team Contact us 0845 2960028

  7. The Giving Machine and website donations not being correctly credited to Barclays account Possible PayPal update issue. WB to investigate.

  8. Just giving page functional

  9. a. Hilary, Jane, Will are administrators

  10. February 2023 Better together for healthy marrow (BTFHM) “SuperRare” campaign raised £388.58

  11. Regular small income from Lottery Grant

  12. Accounts prepared by Willem Buckley

  13. Grant application to Jeans 4 Genes submitted re updating of website (see below)

Governance:

1. Charities annual return due Jan 2024

  1. Will Buckley has updated DC Action constitution

  2. Tax return due Jan 2024- Will to check if still need to submit these.

Projects:

1. Better together for healthy marrow alliance, lottery grant Access to administrative and logistic infrastructure First foray into fundraising (see above)

Emotional support online one to one (via Maggies psychologist)

Emotional support online courses (resilience, aimed at those with bone marrow failure, via Maggies)

Resilience assessment undertaken Main actions required: Update website (esp. security, better prominence of educational materials) Improve engagement with members (DC Action very

active in community reference group. Regular online meetings planned 2024)

Appoint additional trustees (WB appointed,

open to further trustees) Annual meeting of stakeholders: JP and HL attended. Very useful for finding common ground with other aplastic anaemia charities and for understanding how best to use the Better Together team funded by the lottery grant.

Test and learn projects selected for 2024

Informed by results of community survey (see below)

  1. Benefits advice

    • a. Includes web-based tools (to be developed) and individual access to advice (now available: currently funded to end 2024)

  2. Information resources creation

  3. a. Community survey (BTFHM project, funded by pharma via Aplastic anaemia trust):

Completed 2023- report published

2 launch meetings- 1 open to pharma, 1 patients/caregivers only. Both attended by HL, JP and DC Action community members. Need for better information (including on scientific trials), benefits support, multidisciplinary care* and emotional support.

2. DEMISTIFI, NIHR grant

Multidisciplinary 5 year project to investigate diagnosis and prevalence of fibrosis (the main cause of death in dyskeratosis congenita/telomere biology disorders) via big data, MRI scanning (to develop a “fibrosis score”) and volunteer patient cohorts and data/tissue banks.

3. Interventional trials: REMAP-ILD

Consideration of novel trial design to enable local inclusion of underserved communities, including those too unwell/ financially unable to travel to research centre

4. Student voice prize

HL interviewed by a medical student (Holly Richards, Queen Mary, London) who wrote an essay on dyskeratosis congentia for the student prize. Winner to be announced early 2023. (Essay to be published on DC Action website, if suitable and more widely if a winner)

Meetings:

Feb 2023: DEMISTIFI biennial stakeholders meeting (see above) Oct 2023: TFHM annual in-person meeting (see above) Nov 2023: British Thoracic Society winter scientific meeting, London. Attended by JP, WA and AD DC Action stand Multiple contacts and fruitful medical/scientific feedback. Need for second DCAction telomere interest clinical/scientific group meeting highlighted.

Nov & Dec 2023 Online community survey report launch public/ community meetings (see above)

CCCTAA meetings (bimonthly): attended by HL and/or JP. Mainly focussed on patient registry

Members:

1. 3 new families in 2023

2. Increased engagement with existing DC Action members, principally from BTFHM/DEMISTIFI projects.

Publications:

  1. As per DEMISTIFI

  2. Case report WPL Joe Wheater (UEA medical student, Dr ASad Luqmani , Hammersmith Hospital, Dr H Steve Jenkins, Broomfield Hospital, HJL) submitted to BMJ Case reports. Rejected after review by BMJ case reports. On hold

Specialist clinic: Importance/ unmet need highlighted by BTFHM survey. NHSE has new service specification. Letter submitted (see BTFHM, above). BTFHM to submit applicant for haematology/infection/immunology specialised services committee.

New medications trials:

  1. (See REMAP-ILD-above) HL & JP to continue promoting to professional contacts: 1. adaptive drug/other intervention trials. 2. Baysean randomisation in trial drug allocation 3. Trial governance enabling local (not centralised) participation

  2. HL & JP have been in discussion with Cincinnati US centre/ biotech company re UK patients being funded for travel to participate in trial of gene editing ex-vivo blood cell telomere elongation treatment.

  3. a. US health care model unsuitable for UK patients- further discussion needed on safeguarding of access to non-trial-related healthcare

Collaborators.

1. Gary Woodward Dyskeratosis Congenita Trust

  - a. Ongoing contact. Collaboration for Jan 2024 online patients’ meeting. Further quarterly meetings planned if successful.

2. Team Telomere (TT)- DC Action have reached out and JP/ WA represented DC Action at an online meeting with Katie Stevens, TT Chief executive, to discuss working together. Team Telomere subsequently invited to co-participate in BLF scientific meeting but no response. Channels of communication to be kept open.

3. M4RD

4. Rare beacon

5. Genetic alliance membership to continue

Website

Minor updates complete.

Professional assistance required for security/accessibilty upgrades Adam Faulkner will assist with visuals/design

Information resources

1. “Cheatsheets”

All updated 2023

2. Poster for academic meetings

Created

3. Patient pamphlet (generic, introduction to DC – new member)

Under development

DC Action Interim Management Accounts, FY 23-24, as at 19 Dec 23

Name Date Payment
in, £
Balance carried forward 31-Mar-23 6716.9
Amazon Europe 24-Apr-23 5
Just Giving 2-May-23 63.36
Amazon Europe 19-May-23 18.38
Just Giving 30-May-23 175.55
Aplastic Anaemia Trust 1-Jun-23 840
Just Giving 6-Jun-23 68.27
Just Giving 12-Jun-23 52.37
DSJ Partners 20-Jun-23
British Thoracic Sociey 24-Aug-23
Aplastic Anaemia Trust 1-Sep-23 840
Etsy 18-Sep-23
Just Giving 2-Oct-23 29.03
Cashier's Ofce 4-Oct-23
Jane Paxton 11-Oct-23
Minuteman Press 27-Oct-23
8808.86
Balance carried forward 7092.67

Payment Purpose, item, activity or service out, £ As per Barclays bank statement 3 May 23 Donation(s) Donation(s) Donation(s) Donation(s) Income from 'Better Together' charity Donation(s) Donation(s) 1080 Accountancy services 480 Conference fee - charity stand Income from 'Better Together' charity 12 Display stand Donation(s) 37.5 Refund of expenses - display stands 32.69 Refund of expenses - British Thoracic Sociey meeting 74 Printing - DC Action educational posters 1716.19

Reconciled with Barclays bank statement 2 Nov 23

Repayment
required?		 Repaid Date repaid Remarks
No
No
No
No
No
No UK National Lottery Grant
No
No
No
No
No UK National Lottery Grant
No
No
No
No
No