2023 - Looking back over the past year at Alopecia UK Join us as we reflect on the past twelve months of Support, Awareness and Research at Alopecia UK.. January We started the year by welcoming a new staff member – our Volunteer Manager Sarah Bell. Sarah has worked hard over the past 12 months to shape our volunteer programme, helping to ensure we have the best people volunteering for us and that they have the best experience possible. Sarah will be leaving us at the end of January 2024, and we are currently recruiting her replacement. If you could continue Sarah’s great work to embed volunteering across our work, applications are open until 5th January and further details can be found here. At the end of the month, Sue’s recording for Aderans’ ‘Losing it – Your Hair Loss’ podcast aired. You can listen again here. February We were delighted to welcome comedian Zoe Lyons to our team of Ambassadors in February. Amy wrote a blog about a gig of Zoe's that some of the AUK team were able to get along to, which you can read here. In the same month, we had exciting news in Research as we awarded our first ever PhD bursary to a project titled ‘The Alopecia Areata Rapid Access Clinic – Can early access improve outcomes in patients with recent-onset alopecia areata?’. Alopecia UK is investing £107,470 in this project over the next three years. Read more here. 10 year-old-Cameron shared her film all about alopecia – ‘I Am Cam, I Am’. You can watch this here. (Watch for more about Cam later in our update). We also welcomed Kimberly Brown to our Trustee Board. At the end of the month, we were disappointed to learn that NICE’s draft guidance for baricitinib was not to recommend the drug for routine commissioning in the NHS. In 2023 we have spent a lot of time, energy and resource, from a combination of staff, trustees and volunteers to advocate for new licensed drugs to be made available to patients who wish to try them. Following a further no after the 2nd committee meeting, Alopecia UK was the sole party to appeal the decision. We were encouraged that some of our appeal points were upheld, and put up a passionate plea in an appeal hearing in September. We were then angry and frustrated when our appeal was later dismissed. Read the latest position on baricitinib following the September appeal here. March After a break of 3 and a half years due to the pandemic, we were thrilled to be able to bring back our Big Weekend event from 3rd to 5th March in Birmingham. Organised by our Events Manager, Naomi Hall, the event welcomed 176 attendees from all across the UK, and including our staff team, volunteer team, sponsors, exhibitors and speakers, we had 268 people in total join us. With talks and sessions on alopecia areata, scarring alopecia and androgenetic alopecia, gut health and nutrition, mindfulness, JAK inhibitor drugs, appearance-related anxiety and personal experiences, along with an exhibitor hall packed with products and services, we were pleased to deliver a varied event with something for everyone. Event feedback was very positive and we look forward to bringing Big Weekend back in 2025. Read more about the 2023 event here. In March, we introduced two new support groups - Kent East and Kent West. April We welcomed over 300 people to our popular Alton Towers event in April. Attendees enjoyed a day of awareness, support, friendship and fun, all whilst getting to experience the brilliant rides that the theme park has to offer. We are looking forward to doing all again in just a few months. Get your tickets to join us here. April also saw us introduce the AUK Community Card (previously called AUK VIP Card). The card costs £35 (with no expiry date) and is a great way to support the work of Alopecia UK, whilst also getting discounts with more than 50 businesses across the UK. Support the work of Alopecia UK by purchasing your AUK Community Card today here. In April, we welcomed a new support group in Essex. We were pleased to welcome a new finance assistant, Kerry Wadsworth, to the charity to help with bookkeeping and payments. May We welcomed new Research Committee members and said goodbye to others. Dr Syreeta Daw, Dr Margo Gkini and Dr Kevin McElwee joined the committee, whilst Dr Annika Astrand and Dr Nigel Hunt stepped down. You can find out more about our Research Committee here. In May, we were pleased to introduce a new volunteer-led support group in North Hertfordshire. June In June we were honoured to be invited to the European Hair Research Society (EHRS)’s conference in Sheffield. We played a big part in the conference, which welcomed 250 delegates from 26 countries. Our CEO, Sue Schilling, delivered a heartfelt address in the opening talks, we sponsored two early career researchers to attend the conference, and we had a stand at the event, providing information about the charity and the funding we have available for researchers. In addition, we were also delighted to award a poster prize for the research project most likely to impact patients. Read about our time at the conference, including a link to a more scientific round-up from our Research Manager Niels Bootsma, here. At the end of the month, we were pleased to be invited back to the 103rd Annual Meeting of the British Association of Dermatologists in Liverpool, raising awareness with dermatologists about how Alopecia UK can help their patients, and continuing to advocate for NHS wig provision and treatments. Our Psychological Wellbeing Lead, Kerry, spoke at the British Psychological Society’s Division of Health Psychology Meeting about the socioeconomic impact of alopecia areata. One of our young fundraisers appeared on BBC’s The One Show and was surprised by Alopecia UK Ambassador Zoe Lyons at a trip to a theme park. Find out about how Jesse fundraised for us this year here. Our Operations Manager, Amy, attended the GlobalSkin conference in Brussels, a brilliant opportunity to connect with other patient organisations from around the world. Amy learned all about the GRIDD study (which is still looking for participants before the deadline of 31st December 2023). It would be amazing to get a few more people completing the survey before the end of the month. Details here. In June, Linzi Brack of Diamond Wig Bank reached a fundraising milestone for us by reaching a grand total of £10,000 since she started operating the wig bank in January 2019. Read all about her efforts, including how to send her any unwanted wigs, here. July We launched a support provision survey to explore our community’s views on our support workstreams, preferences for support delivery, and feedback on current resources. We look forward to the results of this survey helping to guide our work in 2024 and beyond. You can read a summary of the results here. The results of our study in collaboration with the Centre for Appearance Research (CAR) exploring the socioeconomic burden of alopecia areata was published, the findings of which have been presented at conferences to highlight the impact of the disease to professionals in the hope of improving the experiences in healthcare. Read our summary here. A brilliant fundraising event was organised by a family who have attended our Alton Towers. Elizachella was organized by Hannah White, mum to Eliza. Their final total (including Gift Aid) stands at a whopping £6,155 which is just phenomenal. Learn more about their fundraising here. August We were excited to welcome 25 families to our 3rd Kingswood Family Residential Weekend event. We LOVED hearing this feedback: “It was our second weekend. We enjoyed every minute of it. It’s hard to say what was the best because the people and atmosphere made it all absolutely great.” “The staff and volunteers were so kind, I did joke and say that they must do a course on kindness before they come, so welcoming.” We are looking forward to doing it all again in August 2024 – keep your eyes peeled in the New Year for ticket sales opening. In August, we welcomed a new Chair of Trustees to our Board. Chris Philipsborn took over the Chair position from Simon Ray who had served for nearly 8 years. We are currently needing to recruit a new Treasurer to our Trustee Board. If you have some accounting experience and would like a voluntary position that makes a big difference (and looks great on your CV!), please find details here. In the same month, we welcomed new members to our Lay Research Panel too. We were pleased to introduce two new support groups in Reading and King's Lynn. September Alopecia Awareness Month 2023 was another busy one for Alopecia UK. We started the month by awarding 11-year-old Cam (as mentioned back in February) the Hannah Dennis Alopecia Awareness Award 2023 for all her efforts in raising awareness of alopecia. Read our interview with her here. The first NICE appraisal meeting for ritlecitinib (a JAK inhibitor drug) took place in September. Sadly the draft decision from NICE, received at the end of November 2023, is not to recommend ritleticinib for routine commissioning for the treatment of alopecia areata. This news is especially frustrating, as ritlecitinib was licensed by the MHRA on 1st November 2023. We were incredibly grateful to have more than 30 fabulous folks sign up to be Charity Champions, raising over £25,000 for Alopecia UK through a mixture of challenges including star-jumping, skipping, cycling, swimming, running, walking and hair-cuts/head-shaves. We also saw fundraising events, collections and cake sales, as well as people speaking in schools and workplaces and posting to their social media. Read our latest update here. Read more about our awareness efforts during the month here. During the same month, we attended the British Dermatological Nursing Group’s conference in Harrogate, speaking to more that 80 nursing staff about how we can support their patients. Our biggest fundraiser in September was our Trustee Emma Hickinbotham who raised a staggering £8,200 by going wig-free for a week, a huge step for Emma. She wrote a blog about her experiences which you can read here. We also were lucky to have two terrific ten-year-olds complete incredible fundraising for us in September. Madeleine and Emily were both attendees at our Kingswood event and it is wonderful that they have gone on to do amazing things to help the charity that has helped them. Read about their efforts here. September was also the month we launched the Alopecia UK Youth Network, a new resource grown out of input from our Youth Voice Board. Find out more here. October Our Bristol Zoo event in October was well-attended with more than 80 people joining the event. We said goodbye to our Psychological Wellbeing Lead, Kerry, as she began a new career with the Centre for Appearance Research. Whilst we were sad to see her go, we know she will do amazing things in her new role. October also saw the launch of the first phase of the Global Registry of Alopecia areata disease Severity and treatment Safety (GRASS) UK. We were pleased to be able to bring back our online support groups for adults affected by alopecia, thanks to a new volunteer, Jo Connelly, stepping in to assist us with this. Details of our next online meeting can be found here. November In November, we attended the British Hair and Nail Society’s symposium in Manchester, with CEO Sue Schilling informing clinicians about the work of the charity, including how we can support patients and the funding opportunities available to any doctors participating in research. We said goodbye to our Trustee Simon Ray, after 8 years serving on the Board. Read his thoughts and memories of his time with the charity here. We also welcomed a new staff member to the team. Matt Small joined as our Finance and Operations Manager. This appointment means that our previous Operations Manager, Amy Johnson, will be moving in to a communications-focused role in 2024. Meet Matt here. We added another new support group to our website. Our new Norwich support group will meet for the first time in January. Meeting details can be found here. December Our Research Committee met this month to review funding applications received for projects on alopecia other than alopecia areata, with decisions on awards to follow in the new year. We launched our AUK Advent Appeal, asking our community to consider donating £24 to help support our work into 2024. In our final Trustee meeting of the year, we bid farewell to Ruth McPherson, who leaves the Board after 6 years following the merger of Alopecia UK and Autoimmune Alopecia Research UK. During her time with us Ruth has given a huge amount of time and energy, sharing her expertise with the Trustee Board and staff team. She has volunteered at Big Weekend and Alton Towers events, and fundraised on a number of occasions including running the London Marathon. As well as the summary of our year above, there is so much more that we haven’t mentioned, including the 111 support group meetings led by volunteers across the UK in 2023, the 7 regional events for children with alopecia (including our first in Northern Ireland), the 220+ support calls and emails received, the 4 private Facebook groups moderated with care, and more. It is only with the support of our amazing donors, fundraisers, volunteers, Service Directory businesses, and partners that we are able to do what we do. A HUGE thank you to everyone who has supported us in 2023. We have set ourselves a modest target of £2,000 for our Advent Appeal. Please help us to reach this total with a donation today. Your support this December would mean the world to us. Donate to our Advent Appeal today Season’s Greetings to all our community, and wishing everyone all the best for 2024.