Research for the hero inside yourself Firstly, we make no apologies for the cheesy title for this latest blog post and we hope you will be singing that song all day, assuming some of our readers can remember the M People classic from the mid-nineties… At Alopecia UK, we have always been very aware of the need for better support and treatments for people with alopecia. As a patient organisation, we hear only too often of the frustrations and disappointment that many within the alopecia community experience after multiple visits to doctors and other experts, as they seek something to make it easier to live with their condition. We are passionate about doing our bit to try to find new and better ways of treating and managing alopecia. This is why our Research aim is so important, and why it has been one of Alopecia UK’s aims since the charity was founded in 2004. For the first ten years, the charity was entirely volunteer-led. There was only so much that the charity could do around the aim of Research, limited by capacity of a volunteer team and a very modest charitable income. Alopecia UK is proud of how far it has come in the past decade, especially with how we have been able to begin investing in research projects. We often hear those within the alopecia community say ‘There is no alopecia research happening’. Whilst we agree that we would like to see much more research into alopecia taking place, there are researchers looking for the answers to the questions that remain about alopecia, with the hope of finding new treatments and, ultimately, a cure. Being the small charity we are, we perhaps do not shout as loud as we should about the research we have supported over the past few years and what we hope to do in the future. However, it is fair to say that in recent years our Research aim has gathered pace. Between 2013 and 2015, Alopecia UK took part in a Priority Setting Partnership with the James Lind Alliance to gather the views of people with alopecia to establish the priorities for what research we wanted to support in future. We have come a long way since then… In 2017, Alopecia UK merged with another charity, Autoimmune Alopecia Research UK, to broaden and strengthen our work to improve the lives of those affected by alopecia. Autoimmune Alopecia Research UK had already taken the important step of fundraising to open a biobank at the University of Glasgow, which would build a vital collection of blood and other tissue samples including scalp biopsies from people affected by alopecia, to supply the research community with the essential materials for investigation. Thanks to Professor Simon Milling, the biobank project is still thriving, and you can here more about this and other research in our Research Week Webinar: Getting to the roots of alopecia areata, on Tuesday 21 September 2021, at 1pm. Our final webinar of our series for Alopecia Awareness Month, Treatments and Alopecia Areata on Thursday 23rd September at 1pm, will look at the new treatments that are coming out of current research and clinical trials, including JAK inhibitors. We launched our ‘Research Pots’ funding programme in 2018, providing grant funding to researchers to enable them to get their projects off the ground. We did the same again in 2020 and are currently in the process of awarding our 2021 grant recipients. It is expected that once the 2021 awards have been made, Alopecia UK will have invested over £130,000 in research since 2015. For a charity that continues to have a modest charitable income and, by the Foundation for Social Improvement’s definition, is very much a ‘small charity’ we are incredibly proud of this investment. The latest 2021 grants have yet to be signed and sealed, but we can at least say they represent all the very best of scientific excellence and originality. We would like to thank our wonderful Lay Panel for volunteering their time to review and score the applications, and guide the Research Committee in choosing the winners. We will add details of our 2021-funded studies as soon as we can but in the meantime, you can read all about our previously funded projects here. Due to a generous legacy donation provided to Alopecia UK recently, we will soon be releasing details of a new larger funding scheme specifically for research into the causes and treatments for alopecia areata. Furthermore, it looks like Alopecia UK will also be awarded funding to do a major UK-wide psychology survey looking at the impact alopecia has on people’s lives, including their mental health and wellbeing, careers, finances, and more. We will provide more information on this as soon as we are able. Meanwhile, we are building important external partnerships by joining forces with other charities that are also promoting research into other autoimmune conditions, including type 1 diabetes, psoriasis, multiple sclerosis, arthritis, and coeliac disease. Like alopecia areata, these conditions all involve inflammation – in which the immune system unleashes a torrent of damaging effects on different parts of the body (hair follicles in the case of alopecia areata). There are likely to be similarities and overlap in how the damage occurs and so combining our efforts under ‘Connect Immune Research’ could lead to new treatment options for alopecia and other conditions. This is why we are thrilled to be involved in organising the new funding being offered thanks to the generosity of the Yuti and Lorna Chernajovsky Foundation. Over the next 2 years £1.3 million will be provided by the Foundation, for research on inflammatory disease mechanisms. We hope you will agree with us that Alopecia UK has come a long way on our Research aim in recent years. We are a small charity but we work hard to ensure we are doing work under all three of our aims of Support, Awareness and Research. None of what we do would be possible without the generous support of people affected by alopecia. We hope to bring further good news about this growing area of research. Back to the title of the blog post (it wasn’t just a pun, honest). We all face challenges and some days are harder than others to live with hair loss. Everyone dealing with alopecia is a hero. We deserve answers. We are worthy of better treatments. We deserve lots of investment in research. Research for the hero inside yourself. You can start singing again now... Make a donation to Alopecia UK today to help us continue our research work.