During the financial year ending January 31, 2025, Friends of Cymru Sickle Cell and Thalas-saemia CIC (FOCSCT) continuously consulted with our members and stakeholders to ensure that we delivered activities and tailored individual support that benefited individuals and fami-lies, as well as positively impacted the community we serve. As a result, we: 1. Improved Financial Support for Families: By assisting families with their Disability Living Allowance (DLA) applications and accompanying them through the appeal process, FOCSCT helped secure financial aid for families. This support has been crucial in covering the extra costs associated with raising a disabled child, thereby relieving some of the financial burden on these families. 2. Stable Housing Solutions: FOCSCT played a pivotal role in helping families transition from temporary to permanent accommodation that meets their specific disability needs. By covering decorating costs and coordinating with occupational health services, families are now in safer, more suitable living conditions, which positively affects their overall well-being. 3. Access to Recreational and Supportive Activities: The Second Saturday Club (2SC) has created a safe and enjoyable environment for children and young people affected by SCD and TD to connect with peers, engage in activities, and share their experiences. This fosters a sense of community, belonging, and emotional support among the participants. 4. Enhanced Knowledge and Confidence: The community education event on gene therapy and editing provided families with valuable information and answered critical questions, lead-ing to a greater understanding of their conditions. Increased knowledge enables families to make informed decisions about their healthcare, thereby improving their confidence in advo-cating for their needs. 5. Empowerment of Young People: By establishing a youth committee and involving young people in the decision-making process, FOCSCT has empowered the next generation to voice their concerns and needs. This not only boosts their self-esteem but also engages them in civ-ic activities, enabling them to influence the direction of programmes that affect their lives. 6. Increased Participation in Health and Wellness Activities: Support for families to partici-pate in initiatives like Over The Wall Camp provides children and their siblings with unique experiences that promote confidence, friendship, and personal development. These activities help mitigate feelings of isolation and in still a sense of normalcy in their lives. 7. Building Connections with Health Professionals: The partnerships developed with health professionals and community leaders during events encourage ongoing dialogues be-tween families and health services. This can lead to better health outcomes and a more re-sponsive healthcare system for those affected by Sickle Cell Disorder (SCD) and Thalassae-mia Disorder (TD). 8. Advocating for equitable health outcomes: The impact of providing emergency supplies during hospital visits is significant. By supplying necessities, we help reduce the stress and anxiety families face during hospital admissions, preserving their dignity. Additionally, advocat-ing for equitable access to healthcare and necessary medications helps address systemic in-equalities, thereby improving overall patient outcomes. These efforts foster community support and compassion for vulnerable individuals in challenging situations. Overall, these impacts contribute to a stronger, more informed, and more resilient community, thereby improving the quality of life for families affected by SCD and TD.

We are committed to empowering the residents of Wales who are affected by Sickle Cell Dis-order (SCD) and Thalassaemia Disorder (TD). As a beneficiary-led organisation, we play a pivotal role in providing critical resources and support to individuals and families in our com-munities. SCD and TD are severe, inherited blood conditions that create lifelong challenges with no universal cure. Individuals facing these conditions encounter significant hurdles in their daily lives, which impact employment, education, healthcare, housing, and access and enhance their quality of life. By uniting our efforts, we can foster a stronger, more inclusive community for everyone in Wales. Our commitment to listening and engaging is evident through continuous consultation via WhatsApp, personalised meetings with individuals and families, our "Let's Talk" sessions on Zoom, and the S2C initiative. These interactions enable us to gather valuable written and ver-bal feedback regularly. The insights from our stakeholders play a crucial role in shaping and guiding FOCSCT's activities, resulting in FOCSCT taking action. As a result, and thanks to di-rect input from those we serve, we successfully applied for and received funding from two key grants: 1. BBC Children in Need We Move Fund. 2. Lloyds Bank Foundation – Deaf and Disabled People's Organisation (DDPO) Fund. Actions Taken FOCSCT regularly holds meetings with families to conduct welfare checks. We have support-ed families with their Disability Living Allowance (DLA) applications by assisting them in filling out the forms and guiding them through the appeal process by connecting them with relevant agencies. Additionally, FOCSCT accompanied families to the tribunal, resulting in a family be-ing awarded DLA with their award backdated. This made a significant difference, as the award helped cover the extra costs of raising their disabled child. We also supported families transitioning from temporary accommodation to permanent hous-ing that meets their disability needs. FOCSCT covered the costs of decorating their new home and facilitated contact with occupational health services, which resulted in a stairlift being fitted for a child following a hip replacement operation. To ensure that children and young people could attend the Second Saturday Club (2SC), we covered transportation costs for families. This monthly youth club provides a safe, fun, and supportive environment for children and young people affected by sickle cell disorder (SCD) or thalassaemia (TD) to meet, receive support and advice, and engage in activities. Attendees share their feedback during each session, both verbally and in writing, which is crucial for the development of the 2SC. We organised and funded transportation for families, their advocates, additional carers, and supporters to attend a FOCSCT Community Education event titled "Thalassaemia and Sickle Cell Disorder in Wales – Is There a Better Future? Gene Therapy and Gene Editing for Tha-lassaemia and Sickle Cell Disorders." The discussion featured speakers who communicated directly and honestly with families about gene therapy and editing. Participants gained a deeper understanding, and families felt more confident asking questions. In Wales, where Sickle Cell and Thalassaemia are low-prevalence disorders, opportunities for informed dis-cussions are limited. In August 2024, the National Institute for Health and Care Excellence (NICE) approved managed access to gene editing for those with transfusion-dependent beta-thalassaemia through the NHS, and FOCSCT campaigned for similar access for people with SCD. We also assisted a family with transportation and provided them with appropriate clothing for their children to participate in Over The Wall Camp. This UK-based charity offers children and young people living with health challenges, along with their siblings and families, the chance to experience a world of mischief and magic. This participation helps families build friend-ships and confidence through meaningful and exciting activities in a safe environment. We successfully applied for grants from BBC Children in Need and the We Move Fund for a project called the Second Saturday Club (2SC). This youth club enables children and young people affected by SCD or TD to have fun while meeting others who share similar experienc-es. Additionally, the We Move Fund empowers young people by enabling them to deliver and organise spaces that amplify their voices. The young people established a youth committee and became involved in the organisation's decision-making process. The Youth Committee has met with the First Minister of Wales and senior leaders from Public Health Wales, as well as specialists from various health fields. Through these interactions, the youth gained confidence that enhanced their self-esteem in organising and planning interviews. This experience led to The S2C organising a film screen-ing and panel discussion at Chapter Art Centre in partnership with The New Black Film Col-lective. The panel included professionals such as the Clinical Psychologist from Clinical Neu-ropsychology and the Head of the Department of Child Health Psychology at Noah's Ark Chil-dren's Hospital for Wales. We provide emergency supplies for adults, children, and young people admitted to the hospi-tal. Due to the cost-of-living crisis, many families struggle to afford necessities when visiting healthcare facilities. This includes toiletries (such as shower gel, toothbrushes, and tooth-paste), pyjamas, sanitary products, and drinks to stay hydrated. Additionally, we advocate for equitable access to essential medications and pain relief, thereby addressing existing healthcare inequalities.

The aggregate amount of emoluments paid to or receivable by directors in respect of qualifying services was £20,938. There were no other transactions or arrangements in connection with the remuneration of directors, or compensation for director’s loss of office, which require to be disclosed

No transfer of assets other than for full consideration