Simon Ray Chair of Trustees Expand Who am I? I'm Simon Ray and I am Alopecia UK's Chair of Trustees How did I get involved with Alopecia UK? My first contact with Alopecia UK was back in 2013 when I swam the English Channel raising money for four charities close to my heart, Alopecia UK being one of them. Since then, I have followed the charity and attended Alopecia UK's Alton Towers event in April with my wife and daughter. Seeing the impact the day had on those who attended, I was inspired to offer my services and got in touch with Jen to see if I could help out. What is my alopecia story? My wife Anne developed alopecia in March 2012. It started with a few bald patches but her hair did not really start to fall out properly until we were just 3 weeks away from a holiday of a lifetime (6 weeks in Australia that we had been planning for 4 years!). We did manage to get away to Australia (it was touch and go as to whether we would!). Anne left the UK with most of her hair and came back with none. As you can imagine, we experienced the distress and grief that the loss of hair so often brings. Thankfully today Anne feels good about the world and has come to terms with her alopecia. Alopecia UK has helped with the journey. What are my hopes for Alopecia UK? I want to improve the support structure at the very beginning of everyone’s alopecia journey and that usually means that difficult first visit to the GP. This is such a critical time when alopecia can wreak havoc with someone’s mental state and the psychological impact can so often be missed by the GP. I want Alopecia UK to be there at the very beginning with every GP in the UK being aware of Alopecia UK and the really positive work the charity does to help those struggling with their hair loss. This means training GPs, distributing literature, attending GP conferences and developing online learning for GPs (alopecia is not currently covered in any detail on their curriculum). I want to help Alopecia UK to develop a stronger network of support groups as I can see how powerful peer support can be. I hope to see the charity continue to grow from a predominantly voluntary organisation to an established and sustainable charity that is around for the long-term. Alopecia UK is so lucky to have the support of fantastic fundraisers but I would like to develop regular donations that would allow the trustees to commit to longer term spending. I am excited to be involved and look forward to helping Alopecia UK continue to develop into the charity that everyone affected by alopecia deserves.
Lucy Rogers Trustee & Treasurer Expand Who am I? I am Lucy Rogers, one of Alopecia UK's trustees. I am also the charity's treasurer. I was appointed to these roles in November 2017. How did I get involved with Alopecia UK? I first volunteered with Alopecia UK at the Alton Towers trip in 2016. This was my first time meeting so many other people with Alopecia as I’d never really got involved with support groups before. As I’ve always been ok with having the condition, I guess I just didn’t think I’d get much from it but I was wrong. It was such a humbling feeling to see how the support network really boosted people’s confidence and created such a sense of togetherness. Many people took such huge steps by going bald in public for the first time and to see how the event made such an impact on their courage really inspired me to get more involved with the charity. Alopecia is a condition that can make people feel very isolated and alone, so to see the children meeting others like them at Alton Towers really struck a chord with me. I met my good friend Amy Harmsworth, (London support group lead) when we were both young and newly diagnosed. To have someone who understands what you’re going through and how you’re feeling is so important and I know my Alopecia journey would have been completely different if it wasn’t for Amy. Since then both Amy and I have volunteered and fundraised wherever we can. We also took part in Total Warrior in the Lake District in August 2016 as part of the ‘Apatchy Warriors’ team. It was an amazing sense of achievement crossing the finish line with my bald-headed chums, having completed 6 miles of challenging obstacles. What is my 'alopecia story'? My mum found my first patch on a holiday in Wales when I was 10 years old, it was about the size of a ten pence piece. For many years after that I’d have a few large patches here and there, but I could always cover them with some clever product and hair styling (and LOTS of hairspray).At secondary school it became more difficult to hide so I started wearing hats to school. This was against the school uniform policy so I made the decision that I’d like my situation to be communicated to people rather than being asked why I was wearing a hat. Since then I have always found that being upfront with people I spend a lot of time with (at work etc) is so much easier for me. When I went to University I decided it was time to brave the shave and I’ve never looked back since. I now own over 25 wigs and really enjoy wearing different colours and styles depending on how I’m feeling – another reason I prefer people to know, it avoids the ‘have you changed your hair?’ type questions! Don’t get me wrong I’d absolutely love to have a full head of my own hair but I always like to think of the positives. Having Alopecia has given me some great opportunities, allowed me to meet some wonderful people and has given me the confidence to try many hairstyles I wouldn’t have done before. What are my hopes for Alopecia UK? My hopes are that Alopecia UK will get even bigger and even better through increased awareness and sustained fundraising. I am excited for the future of the charity following the merger with AAR-UK and think that this is a positive step in pushing the charity forward to achieve its goals.I was delighted when I was approached and asked to become part of the board. Having an accountancy background, I hope that I will bring a fresh perspective to the team and bring new ideas to help plan for the future of the charity.
Karen Green Trustee & Chair of Research Committee Expand Who am I? My name is Karen Green and I am a former Trustee for the Charity Autoimmune Alopecia Research UK (AAR-UK). Since the merger with Alopecia UK I am now Chairperson of the charity's Research Committee. How did I get involved with AAR-UK? As many of you will know, the journey through Alopecia can often be a long and difficult one. My Alopecia took me to the depths of despair and during one of these desperate days I came across a blog written by a lady called Jayne Waddell. Jayne wrote in detail about her battle with Alopecia Universalis and how she felt not enough research was being done and insufficient information was being given by GPs to patients when someone is diagnosed with this devastating condition. I contacted Jayne and she told me she wanted to set up a research charity purely to look into Alopecia research and asked if I would join her. I jumped at the opportunity to finally try and do something to find a cause and cure for this cruel disease and I offered my support. That was in November 2012 and we worked very hard to raise funds and achieve the start of various projects and develop links with the medical profession. The past few years with AAR-UK included many changes of personnel and trustees, including Jayne herself who has moved to Australia, but her legacy remains as we now combine our efforts with AUK. Together we can achieve so much more. What is my Alopecia story? On 1st October 2011 I was sitting in my garden on an uncharacteristically hot day, surrounded by my family celebrating my son's 30th birthday. I felt a wonderful wave of happiness and contentment on that day - thank goodness I did not know what was just around the corner. Within weeks, all of my hair had fallen out and I had been diagnosed with Alopecia Universalis (AU). I assumed there was a treatment I could take that would bring my hair back, and that it was curable - all I had to do was find it. I struggled to find very much support or understanding within the medical profession and I was given a cocktail of steroids and minoxidil which meant I seemed to pick up every bug that was going around. I therefore asked for my Grandchildren not to come to visit if they had a cough or cold as I would catch it and develop bad infections. I became more and more isolated as I found the "off the shelf wigs" uncomfortable to wear, and was constantly worried that it would fall off. At the time, I worked with troubled teenagers and was concerned that if I was breaking up a scuffle my wig may fall off. My hobbies included gardening which proved challenging as my wig kept slipping and as I pushed it back into place I covered myself in mud. In the end I was diagnosed with depression. I went to see a counsellor to talk about my feelings of loss, in particular loss of identity. After all, the face looking back at me in the mirror was not the same one I had become used to for over 50 years. Slowly I began to build a new me and now 6 years later I still have AU but I have made a lot of changes. I have been lucky enough to take early retirement and feel I have now accepted my alopecia, but I am still driven to help other people with this condition. My story is not one of despair - but one of determination. What are my hopes for Alopecia UK? I am really looking forward to working with AUK and my main focus still continues to be research into Alopecia. Research in the UK is still in the early stages compared to the USA. AAR-UK attended the National Alopecia Areata Foundation's annual conference in 2016 and I aim to continue this relationship now we have merged with AUK. I am hoping to develop the research aim of the charity, bringing together experts from all areas of academia and industry to start a co-ordinated approach to Alopecia research in the UK. My ultimate hope is that AUK is recognised as a leading player in Alopecia research and that this encourages more projects seeking sponsorship.
Harry Brunt Trustee & Research Committee Member Expand Who am I? I'm Harry Brunt and I became a Trustee of Alopecia UK in 2016. How did I get involved with Alopecia UK? In January 2014 I committed to a month long ‘Dryathlon’ to raise money for Alopecia UK – a challenging but rewarding experience! I kept in touch with the Alopecia UK team and after I started asking more questions about how I could help further it didn’t take long before I was being propositioned and encouraged to become a trustee. Jen and Amy’s infectious enthusiasm for the charity made the offer impossible to turn down! What is my alopecia story? I was 18 when the first bald patches appeared on the back of my head. For about 8 years they came and went with varying degrees of severity. Despite trying various treatments, at the age of 26 the disease progressed much more rapidly and within 12 months I had lost virtually all the hair on my head. After shaving what was left of my hair, I decided to try and do something positive and raise money for Alopecia UK. From a personal point of view the fund raising helped me enormously - the act of advertising my ‘condition’ and asking for financial support from friends and family also translated into overwhelming emotional support as well. I have now very much come to terms with having no hair, but would like to do what I can to help others who are unfortunate enough to be on the same journey as me. What are my hopes for Alopecia UK? My hope is that one day Alopecia UK may no longer need to exist. This may sound odd, but bear with me….Alopecia is not a particularly high priority in medical research. It is (wrongly) considered to be purely an aesthetic condition and affects a smaller proportion of the population than some more harmful diseases. It is poorly understood and existing treatments are so hit and miss that the medical community are not certain any of them are genuinely effective. I would like Alopecia UK to be in a position to support and encourage the long term fundamental medical research required to develop an effective treatment or cure for future generations. With this ambitious long-term goal in mind, I want to help grow a financially sustainable charity that can continue to provide a vital network of support for people affected by the disease in the present. I know all too well the devastating psychological impact of the condition and want us to do all we can to improve the quality of life for those affected.
Audrey Ball Trustee Expand Who am I? I'm Audrey Ball and I became a Trustee of Alopecia UK in December 2016. How did I get Involved with Alopecia UK? I've known about Alopecia UK for years but it's in the last three years that I have become involved with the charity. I met with Jen first, a chance meeting and I liked her a lot and her vision of what the charity was doing. Getting to know the charity helped me come to terms and cope better with my own condition, I don't think I have ever been so open with it. Since that time I have helped to raise funds and raise awareness of Alopecia UK. I am a passionate sports person and was encouraged to take part in the British 10K London Run in 2015, my first Alopecia UK fundraising event. It was great and it felt good going out fundraising to family and friends for a charity that felt like my charity, my condition. At the 5K mark, I decided to remove my wig for the first time in public. What a feeling, a few well-deserved tears of joy and a moment I will never forget. It was also a watershed moment for me, and there is absolutely no way I would have done it if it hadn't been for the wonderful Alopecia UK running team. What is my alopecia story? I started to lose my hair when I was 5 and lost my hair completely at 18 years old. For many years I managed with small patches that appeared and then grew back again until I lost it all. Up until the point of total hair loss I lived with alopecia quite well. I had long hair and was able to cover up the patches and they came and went again quite quickly. I didn't experience any problems at school. As I got into my teens the patches did get wider and mapped out across the scalp more and they did take longer to come back. I was gradually becoming more aware of the condition but was unable to get any help for it, other than the usual "stop worrying". It was when I was about to turn 18 that I lost all the hair on my scalp and my body and as you can imagine it was life changing. I became very secretive about my alopecia in later life. I wore wigs and they were so natural and convincing that I started to believe my own hype that I wasn't wearing a wig at all. This denial went on for years, which, now looking back, I don't believe was particularly helpful. I didn't want to admit to anyone that behind the scenes I was not coping with the condition. It took me a long time to ever truly accept the condition but it feels great that I eventually did. What are my hopes for Alopecia UK? I hope that alopecia and hair loss becomes less taboo, I hope the condition and what it means seeps further into our society and deeper into our communities so that the journey can be made easier for many. I want the medical world to realise that alopecia is not a cosmetic issue but one that affects the person in many other ways which shapes their lives and who they are. I wish for increased funding and treatments and support services to help those who go through hair loss. I would like all children at an early age to become of aware of the condition and help normalise it for future generations. I would like all the people in the UK who suffer from hair loss, both temporary and permanent, to know that through making contact with the charity it can have a huge positive effect on how you cope, and how you see yourself and the condition. It can really make things easier. Research into alopecia is so important and the charity already does an amazing job to initiate and support research projects but I would like to see more of this on a national and an international basis. I would like to see a multi-discipline approach in research as well using interlinked disciplines such as dermatology, endocrinology and trichology. It all boils down to my hopes of increasing fundraising, building awareness and developing research opportunities, but most of all, supporting the charity to keep on doing what it already does so brilliantly.
Ruth McPherson Trustee Expand Who am I? I am Ruth McPherson, a former Trustee for the Charity Autoimmune Alopecia Research UK (AAR-UK) and now, since the merger, a Trustee for Alopecia UK. How did I get involved with AAR-UK? I first got involved with AAR-UK after meeting the charity's Founder Jayne Waddell in September 2014. I was inspired by her enthusiasm and drive to find answers for people with alopecia and decided that I wanted to do something proactive to help too. This gave me the idea to do a 'Wig Free Week' fundraiser for the charity in October 2015 which was a huge success and raised over £10,000. Shortly afterwards, in March 2016, I was asked to join the board of AAR-UK as a Trustee. What is my alopecia story? I developed alopecia totalis at age 18 having just left school. Losing my hair was traumatic, as I didn’t understand what was happening to my body and was unable to control it. Every time I found clumps of hair in my hairbrush or on my pillow, I felt sick with worry and embarrassment. When I had barely any hair left I decided to start wearing a wig. Over the years I have experimented with many wigs of different cuts and colours, even going peroxide blonde throughout my university year! For almost ten years I hid the fact that I had alopecia from everyone except close friends and family and it was only when I did my 'Wig Free Week' for AAR-UK that I was able to finally open up and speak publicly about it. This felt like a huge weight had lifted from my shoulders and for the first time in my life I was able to realised that I could look attractive and feel confident without any hair. I still wear a wig most days but sometimes I go without it during the summer, when I'm exercising or if I just don't feel like wearing it. I feel much happier in myself now that I've taken back control and want to help others to do the same. What are my hopes for Alopecia UK? I'm delighted to be joining Alopecia UK and look forward to doing more to support the alopecia community. As my day job is in marketing, I am keen to lend my expertise to AUK campaigns and branding as well as helping with the website and social media. I am also planning to get involved with GP education and hope to set up a mentoring service for people who have been recently diagnosed.
Alopecia Areata inc AT & AU Alopecia Areata (AA) including Alopecia Totalis (AT) and Alopecia Universalis (AU) Expand What is Alopecia Areata (AA)? (including Alopecia Totalis (AT) and Alopecia Universalis (AU)) Alopecia Areata (AA) is understood to be an autoimmune condition. The immune system which normally protects the body from foreign invaders, such as viruses and bacteria, mistakenly attacks the hair follicles. This is what leads to hair loss. What does Alopecia Areata look like? Alopecia Areata typically starts as one or more small, smooth bald patches on the scalp. The hair loss can remain as patchy hair loss or can continue until all hair on the scalp is lost (Alopecia Totalis or AT) or complete loss of hair from the body (Alopecia Universalis or AU). Please note that most cases of Alopecia Areata do not develop to the 'totalis' or 'universalis' stage. Alopecia Barbae is a type of Alopecia Areata which affects facial hair only. Is Alopecia Areata permanent? Alopecia Areata does not cause permanent hair loss. The hair follicles are not destroyed and hair does have the possibility to re-grow. Many people with Alopecia Areata do experience full regrowth. However once the condition has developed to Alopecia Totalis or Alopecia Universalis, the chances of full regrowth become smaller. It is quite common for people with Alopecia Areata to experience hair loss on and off throughout their life. Can Alopecia Areata be treated? Treatments may be offered by a Dermatologist but unfortunately none are guaranteed to work. Many people experience spontaneous regrowth without treatment. Treatments are more likely to be effective in milder cases of alopecia areata with small patches of hair loss. No treatments are universally effective. Is there a cure for Alopecia Areata? No, currently there is no cure for alopecia areata. Is Alopecia Areata hereditiary? It is understood that genetics plays a role in alopecia areata. Around 20% of people with alopecia areata will have a family member with the condition. Those with alopecia areata are more likely to have family members with other autoimmune or atopic conditions, such as asthma, eczema, hay fever, rheumatoid arthritis, lupus, psoriasis, thyroid disease and vitiligo. Further Reading The British Association of Dermatologists (BAD) has produced Patient Information Leaflets for all types of skin conditions, including types of alopecia. The BAD Patient Information Leaflets provide details of treatment options available. CLICK HERE FOR THE BAD PATIENT INFORMATION LEAFLET ON ALOPECIA AREATA
Androgenetic Alopecia Expand What is Androgenetic Alopecia? Androgenetic Alopecia is often referred to as 'Male Pattern Hair Loss' or 'Female Pattern Hair Loss'. It is the most common type of hair loss affecting approximately 50% of men over the age of 50 and around 50% of women over the age of 65. Androgenetic Alopecia can also affect younger men and women. It is caused by a number of genetic and hormonal factors. Dihydrotestosterone (DHT) is the main hormone responsible for Androgenetic Alopecia in genetically susceptible individuals. DHT causes hair loss by inducing a change in the hair follicles. The hairs produced by the follicles affected by DHT become progressively smaller until eventually the follicles shrink completely and stop producing hair entirely. What does Androgenetic Alopecia look like? Androgenetic Alopecia tends to look different between males and females. In men, the typical pattern of hair loss is a receding hair line with loss of hair from the top and front of the head. In women, the usual pattern of hair loss is thinning at the crown of the head. Often in women the frontal hairline remains. There are of course exceptions to these patterns but these are typically how Androgenetic Alopecia presents itself in men and women. It is less likely that a woman will experience total baldness as a result of Androgenetic Alopecia. Is Androgenetic Alopecia permanent? The hair follicles affected by Androgenetic Alopecia are permanently damaged and any hair loss as a result is irreversible. Can Androgenetic Alopecia be treated? As with other types of alopecia, there is no cure for Androgenetic Alopecia. However, the effects of Androgenetic Alopecia may be slowed down with treatments. Minoxidil is licensed to treat both male and female pattern baldness. Is Androgenetic Alopecia hereditary? Yes, it is understood that genetic susceptibility is inherited from either or both parents. Further Reading The British Association of Dermatologists (BAD) has produced Patient Information Leaflets for all types of skin conditions, including types of alopecia. The BAD Patient Information Leaflets provide details of treatment options available. CLICK HERE TO READ THE BAD PATIENT INFORMATION LEAFLET FOR MALE PATTERN HAIR LOSS CLICK HERE TO READ THE BAD PATIENT INFORMATION LEAFLET FOR FEMALE PATTERN HAIR LOSS
Scarring Alopecias Expand What are Scarring Alopecias (Cicatricial Alopecias)? Scarring Alopecias refers to a rare group of disorders that destroy hair follicles. Occasionally they are referred to as cicatricial alopecias. The hair follicles are replaced with scar tissue (hence the name). In some cases the hair loss is without symptoms and can go unnoticed for long periods. In other cases the hair loss is accompanied by burning, itching and pain and is more progressive. It occurs in men and women of all ages but it less common in children. Frontal Fibrosing Alopecia, Lichen Planopilaris and Folliculitis Decalvans are three of the more well known Scarring Alopecias. What do Scarring Alopecias look like? Despite the name, there is usually no scar on the scalp as the inflammation that destroys the hair follicle occurs below the skin surface. Are Scarring Alopecias permanent? Unfortunately once hair loss has occurred in cases of Scarring Alopecias, the damage is permanent. The cause of Scarring Alopecias is not well understood. What is known is that the inflammation occurs in the upper part of the hair follicle. This is where the stem cells and sebaceous glands are located. If the stem cells and sebaceous glands are destroyed, the hair follicle cannot regrow and hair loss is permanent. Can Scarring Alopecias be treated? Yes, treatments are available for the different kinds of Scarring Alopecias. Some Scarring Alopecias are more treatable than others and an early diagnosis from a Dermatologist will provide the best chance of success. Further Reading The British Association of Dermatologists (BAD) has produced Patient Information Leaflets for all types of skin conditions, including types of alopecia. The BAD Patient Information Leaflets provide details of treatment options available. CLICK HERE FOR THE BAD PATIENT INFORMATION LEAFLET ON FRONTAL FIBROSING ALOPECIA CLICK HERE FOR THE BAD PATIENT INFORMATION LEAFLET ON LICHEN PLANOPILARIS CLICK HERE FOR THE BAD PATIENT INFORMATION LEAFLET ON FOLLICULITIS DECALVANS Alternatively, you can find a lot of detailed information about scarring alopecias from the Cicatricial Alopecia Research Foundation.
Telogen & Anagen Effluvium Expand The Life Cycle of the Hair Follicle There are three stages that every hair follicle goes through: - Anagen (a phase of active growth) - Catagen (a transition phase between the anagen and telogen phase) - Telogen (the natural phase of shedding) At any one time, all three phases are occurring at any site on the body. A single follicle will go through the anagen phase followed by the catagen phase and then the telogen phase before returning to the anagen phase. What is Telogen Effluvium? Normally 10% of a person's hair is in the telogen phase. Telogen effluvium occurs when there is a higher than average amount of hair shedding, 30% of more. Common triggers for this change in the usual telogen stage include childbirth, trauma, illness, bereavement, sudden weight loss, new medication or hormonal changes. In around a third of those affected, no cause can be found. What does Telogen Effluvium look like? Hair shedding occurs all over the scalp, resulting in a reduced volume of hair. Is Telogen Effluvium permanent? Telogen Effluvium usually resolves itself completely, as the normal length of the telogen phase is around 3 to 6 months after which period the hair begins to grow again (anagen phase). How long it takes for hair volume to return to normal will vary according to the length of hair. Can Telogen Effluvium be treated? There is normally no treatment required for Telogen Effluvium as the hair will start growing once the trigger is removed. Medication is not required. Telogen Efflvium can return if the underlying cause is not treated or if it recurs. What is Anagen Effluvium? Anagen Effluvium refers to the shedding that arises during the anagen (growth) stage of the hair cycle. The main causes of Anagen Effluvium are radiation, chemotherapy, infection, drugs and toxins. What does Anagen Effluvium look like? Sudden shedding of much of or all of the hair on the scalp and often from the entire body, including eyebrows, eyelashes and body hair. Is Anagen Effluvium permanent? In most cases the hair will eventually return once the underlying cause is treated/removed. Anagen Effluvium as a result of chemotherapy treatment will normally recover within 3-6 months of the treatment being stopped. Further Reading The British Association of Dermatologists (BAD) has produced Patient Information Leaflets for all types of skin conditions, including types of alopecia. The BAD Patient Information Leaflets provide details of treatment options available. CLICK HERE FOR THE BAD PATIENT INFORMATION LEAFLET ON TELOGEN EFFLUVIUM
Traction Alopecia Expand Traction alopecia is usually due to excessive pulling or tension on hair shafts as a result of certain hair styles. It is seen more often in women, particularly those of East Indian and Afro-Caribbean origin. Hair loss depends on the way the hair is being pulled. Prolonged traction alopecia can stop new hair follicles developing and lead to permanent hair loss.
Biobank for alopecia research Expand Alopecia UK (AAR-UK at time of donation) funds invested: £20,000 When: March 2017 Project type: Biobank for alopecia research Project Lead: Professor Simon Milling Length of project: 3 years Research Institute: University of Glasgow Condition of interest: Alopecia areata/totalis/universalis (samples also being taken from people without alopecia, for comparison) Funds being used for: Research Nurse to collect biopsies and blood samples for alopecia studies More information about the biobank: AAR-UK set out to establish the first alopecia biobank registry within the UK. To establish this, AAR-UK’s founder Jayne Waddell organised a meeting with Professor Iain McInnes from Glasgow University with a view to finding the best way to proceed for the biobank to be viable. An AAR-UK crowd funding campaign then followed which raised the £20,000 that was required to pay for the clinic to take the samples. Nicola McBride (AAR-UK Research Co-ordinator) worked closely with Simon Milling and Kym Bain from Glasgow University to set up the clinic for the biobank samples. Together with dermatologist Susan Holmes they secured the necessary ethical approval and developed the questionnaires required for the participants to fill in at the clinic with the research nurse. They also put provisions in place to safeguard the samples and ensure that participant’s personal information is protected. The clinic is now up and running and currently runs once a week on a Monday afternoon, usually at the Queen Elizabeth University Hospital in Glasgow. Volunteers from the Glasgow area contact the Research Nurse by e-mail, and an appointment is arranged. At the clinic, the Research Nurse obtains patient consent, completes the questionnaires with participants to get a detailed history, and takes the blood and tissue samples, giving the participant the home kit for stool samples to be handed back into the clinic. The samples are then stored within the biobank at the University of Glasgow. Participants are offered the opportunity to provide blood samples, skin swabs, skin biopsies and stool samples. The biobank was set up in conjunction with Glasgow University student, Kym Bain’s, PhD project which looks at the pathogenesis of alopecia areata and the potential link to intestinal inflammation. Kym's project is funded by Medical Research Scotland and has industry funding from pharmaceutical company, AstraZeneca. The project supervisors are Professor Simon Milling and Professor Iain McInnes (from Glasgow University) and Annika Ȧstrand (from AstraZeneca). Interested scientists can apply for access to samples from the biobank by contacting Professor Milling at the University of Glasgow. Potential participants from the Glasgow area can find more details about the study here.
The effectiveness of mindfulness based cognitive group therapy for social anxiety symptoms in people living with alopecia areata: A single case series. Expand Alopecia UK funds invested: £9840 When: April 2017 Project type: A single case series. Project Lead: Dr Andrew Thompson Length of project: 16 months (end date extended due to adoption leave) Research Institute: Sheffield University Condition of interest: Those living with AA and clinically significant levels of social anxiety Funds being used for: Research Associate (staff costs), Accredited Mindfulness Based Cognitive Therapy (MBCT) Sessions (e.g. group facilitators & room hire/refreshments), Research team and patient travel expenses, dissemination costs, and trial registration with ISRCTN (clinical trial registry). Research question: The main aim of the proposed study is to provide an initial test of the effectiveness of Mindfulness based cognitive group therapy (MBCT) in reducing clinically significant levels of social anxiety in people living with alopecia areata (AA). The proposed research will also examine whether the intervention impacts on depression, generalised anxiety and quality of life. Justification for research project: Whilst AA has few physical health consequences, it can lead to psychological consequences. A recent study found that 42.4% of respondents reported clinically significant social anxiety symptoms. The prognosis for AA is highly variable leading to frustration and uncertainty for the patient, and health care professionals may feel ‘stuck’ with how to support patients. Currently, there is a lack of psychological support for people with AA, despite the clear need. Mindfulness based cognitive group therapy (MBCT) has been found to be helpful in reducing distress in other conditions, but has not been tested with people with AA. The Hair Loss Priority Setting Partnership identified the need for psychological interventions as a top ten priority for patients and clinicians. The proposed research will provide initial evidence on the effectiveness of MBCT for people with AA who experience social anxiety. The data provided from single case research will give (i) a detailed insight into the process of change which can inform intervention development and (ii) detailed information on the types of difficulties people with AA experience. Who is leading the project: Dr Andrew Thompson will lead the project. Dr Thompson has specialist expertise within psychodermatology and has conducted research in this area for the last 15 years. Dr. Thompson has developed skin specific self-help using randomised control trials and qualitative methods. He will be working alongside a team of people including psychologists, PhD students, therapists and dermatologists.
The application of ‘Nanokicking’ in immune disorders Expand Alopecia UK funds invested: £4500 Further Alopecia UK funds committed: £9000 (£6000 for Year 2 and £3000 for Year 3) When: December 2017 Project type: PhD Studentship Project Lead: Teontor Simakou Length of project: 3 years Research Institute: University of the West of Scotland (UWS) Condition of interest: Alopecia Areata Funds being used for: Year 1 time consumables cost including cell culture, nanokicking experiments and PCR as well as screening serum and faecal samples for autoimmune factors. Overall Aim of the Project: To treat alopecia areata using a non-chemical technology based on nanovibrations termed ‘Nanokicking’ Justification for research project: UWS propose that in the future stem cell therapies will be key for many regenerative therapies for many conditions, including those of the immune response. This project will study the application of nanoscale mechanical stimulation protocols ‘Nanokicking’ to manipulate the differentiation of cells that have immune function, thus impacting on the resolution of different immune conditions, such as autoimmune disorders, immunodeficiency and vaccine development . ‘Nanokicking’ has already been successful in the targeted differentiation of Mesenchymal Stems Cells (MSCs) to bone with huge potential for bone regeneration and bone disorders and UWS have data to suggest its role in other tissue type development. In addition to providing insight into the immunological mechanisms underpinning human disease, the technology has the potential to provide in vitro models which could be exploited commercially. Who is leading the project: The project is being run by research student, Teontor Simakou, who is working as part of an interdisciplinary team of enthusiastic scientists, experts in biology and physics. Teontor has a good knowledge of immunology, immunoassays and molecular biology. Teontor’s ambition is to learn how physics can boost biological applications and have a positive impact on global healthcare.
Early Treatment to prevent Alopecia Areata Progression (E-TAAP) Expand Alopecia UK funds invested: £4350 When: March 2018 Project type: Feasibility work to optimise study design Project Lead: Dr Matthew Harries Length of project: 18 months – 2 years Research Institute: Salford Royal NHS Foundation Trust Condition of interest: Children and adults with first episode patchy scalp alopecia areata (AA) Funds being used for: whole feasibility study including focus groups, statistical support, study team costs, specialist IT support for development of surveys and data management, and printing costs. Research question: Can progression of alopecia areata be prevented by early diagnosis and treatment? Justification for research project: There is no robust evidence that any treatment improves the long-term outcomes in AA. The British Association of Dermatologists guidelines currently recommend conservative management as an option for limited patchy AA. However, further episodes of hair loss are common in AA and progression to more extensive disease (from which spontaneous re-growth is unlikely) is well recognised, particularly in those with more extensive or longstanding alopecia at presentation. This study hypothesises that the early identification and treatment of AA at first presentation will increase hair regrowth rates and reduce the risk of relapse and disease progression in the longer term. This pilot work will help inform study design and strengthen a bid for a larger, prospective, multi-centre RCT in AA. If early treatment does improve longer term outcomes this will lead to a paradigm shift in AA management in the UK, with early effective therapy being instituted in primary care and reducing onward referrals to secondary care. Lower numbers of patients progressing to extensive alopecia areata will not only reduce the overall psychological impact of the disease, but will lower treatment costs and diminish wig provision requirements, with significant cost benefit to the NHS. Who is leading the project: The project is being run by Dr Matthew Harries who is a Consultant Dermatologist and Honorary Senior Lecturer in Manchester. The majority of his research experience has been with translational hair loss clinical studies during his PhD (awarded in 2011) and in various studies since. Dr Harries was the co-champion and clinical lead for the hair loss and alopecia areata priority setting partnerships (PSP) run in conjunction with the James Lind Alliance and Alopecia UK. He runs a regional specialist hair loss service with a large AA cohort. Dr Harries will be working alongside a team of people including clinicians, researchers and patient representatives.
Dr Abby Macbeth Expand Profession: Consultant Dermatologist Relevant organisations/institutions: Norfolk & Norwich University Hospitals NHS Trust (Consultant Dermatologist) University of East Anglia (Honorary Senior Lecturer) NIHR Clinical Research Network (Eastern Dermatology Speciality Lead) Research areas of interest/specialisms: Hair loss disorders Alopecia areata Outcomes for research Work/academic background: Dr Abby Macbeth is a Consultant Dermatologist at the Norfolk and Norwich University Hospitals Trust. Abby has a clinical and research interest in hair disorders, in particular Alopecia areata (AA). She was Co-Champion and Data lead for the Hair Loss Priority Setting Partnership funded by Alopecia UK. Current work is looking at ‘outcomes’ for clinical trials in AA, with a focus on what is most important to patients (ROMA- refining outcome measures for trials in alopecia areata). This is funded by the UK Dermatology Clinical Trials Network (UK DCTN). She is the Clinical Research Network Eastern Dermatology lead, a former UK DCTN Registrar fellow, a founder member of the UK DCTN Trainees Research Group and recipient of the Maxwell Charnley Dermatology Research Fellowship. Abby is also a former Trainee Representative of the British Hair and Nail Society. Relevant weblinks: Norfolk and Norwich University Hospitals NHS Foundation Trust University of Nottingham, Refining Outcome Measures for trials in Alopecia Areata (ROMA)
Professor Andrew Messenger Expand Profession: Consultant Dermatologist Relevant organisations/institutions: British Association of Dermatologists European Hair Research Society British Hair and Nail Society British Society for Investigative Dermatology Research areas of interest/specialisms: Biology and disease of hair growth Work/academic background: Andrew is a semi-retired clinical dermatologist. He has had a clinical and research interest in hair disease for many years, including alopecia areata, female pattern hair loss and frontal fibrosing alopecia. Andrew was president of the European Hair Research Society 2004-6, of the North of England Dermatological Society 2008-9 and has been president of the Institute of Trichologists since 2009. Andrew was also Chair of the 7th World Congress for Hair Research in 2013.
Dr Andrew Thompson Expand Profession: Registered Clinical and Health Psychologist Relevant organisations/institutions: University of Sheffield - Reader in Clinical Psychology Sheffield Health & Social Care NHS Foundation Trust - Lead for dermatology pathway IAPT Health and Wellbeing service Relevant advisory/editorial roles: All Party Parliamentary Group on Skin Conditions The Vitiligo Society (Scientific Board) The Katie Piper Foundation (Advisor) British Journal of Dermatology (Editorial Board) Dermatological Nursing (Editorial Board) Research areas of interest/specialisms: Psychological aspects of conditions that affect appearance. The aim of Andrew's research is to gain an understanding of the psychosocial issues associated with conditions affecting appearance; and to develop supportive interventions aimed at alleviating distress. Work/academic background: Andrew is qualified/registered as both a Clinical and as a Health Psychologist. He also holds an additional practitioner qualification in a type of psychological therapy called 'cognitive analytic therapy'. Andrew works on the NHS clinical psychology training programme at the University of Sheffield and teaches a variety of mental health trainees. He is also an active researcher. Andrew has a background in mental health and health and wellbeing associated with long term conditions. He has worked in a variety of NHS clinical psychology services over the last 25 years. Andrew currently provides input into the Sheffield Increasing Access to Psychological Therapies Health and Wellbeing service. Relevant weblinks: Further information about Andrew can be found on The University of Sheffield website.
Dr Annika Åstrand Expand Profession: Project Leader/Principal Scientist Relevant organisations/institutions: AstraZeneca Gothenburg - R&D Research areas of interest/specialisms: Autoimmunity, respiratory and cardiovascular diseases Work/academic background: Annika has a PhD in renal Physiology. She has thirty years of Pharma experience ranging from bench scientist, line management to project leader.
Professor Desmond J. Tobin Expand Profession: Professor of Dermatological Science Relevant organisations/institutions: The Charles Institute of Dermatology, University College Dublin Honorary Visiting Research Professor, Centre for Skin Sciences, Faculty of Life Sciences, University of Bradford Research areas of interest/specialisms: Skin & Hair in Health and Disease using Cell Biology and Immunology research approaches. Work/academic background: Dr Desmond J. Tobin is Professor of Dermatological Science and Director of the Charles Institute of Dermatology, University College Dublin, Ireland (2018-) and former Director of the Centre for Skin Sciences at University of Bradford, where he now holds an Honorary Visiting Research Professorship. Des holds a BSc from the National University of Ireland (Maynooth), a PhD from the University of London (St. John’s Institute of Dermatology) and post-doctoral training from New York University Medical School - Dept. of Dermatology. Over the past 25 years he has researched basic, applied and translational skin/hair sciences, with a particular focus on the biology of human melanocytes/ pigmentation and hair growth disorders (immune based). He is a Fellow of Royal College of Pathologists; Fellow of the Institute of Biomedical Sciences, Fellow of the Royal Society of Biology, and Fellow of the Institute of Trichologists (Vice-president). He has published over 170 publications and his H-Index is currently 56 (Scopus, 2018). Relevant weblinks: University College Dublin, Charles Institute of DermatologyUniversity of Bradford, Centre for Skin Sciences
Professor Fiona Henriquez Expand Profession: Research Group Leader Relevant organisations/institutions: School of Health and Life Sciences University of the West of Scotland (UWS) Research areas of interest/specialisms: clinical immunology host-pathogen relationships immunomodulation by mechanotransduction Work/academic background: Fiona is a Professor of Parasitology and leads the Infection and Microbiology Research Group within the Institute of Biomedical and Environmental Health Research of the School of Science and Sport at UWS. She is currently focused on leading high quality interdisciplinary research, teaching and mentoring early career researchers and PhD students in the area of Infectious Disease, Immunology and Biomedical Science. Fiona gained her BSc (Hons) in Immunology and Microbiology at the University of Strathclyde, where she continued on to a PhD focusing on the characterisation of secretory proteins of the obligate parasite Toxoplasma gondii. She has carried out postdoctoral positions at the Universities of Strathclyde and Glasgow and won a Royal Society International Fellowship pursue host-pathogen relationship research at the University of Chicago. Fiona joined UWS in November 2005 as a Lecturer in Immunology, embedding important parasitology and immunology research skills in the curriculum and establishing important networks with NHS biomedical laboratories. In parallel, her research on amoeba pathogens (Acanthamoeba and Paramoeba) has gained international recognition and has also made a considerable impact on public, industrial and health service engagement. She is a Fellow of the Royal Society of Biology, Higher Education Academy and Leadership Foundation for Higher Education. She is a Member of the Royal Society of Edinburgh Young Academy of Scotland and a passionate STEM ambassador to encourage young people into Science. Relevant weblinks: Further information about Fiona can be found on the University of the West of Scotland website.
Harry Brunt (AUK) Expand Profession: Property Developer Relevant organisations/institutions: Alopecia UK Trustee Research areas of interest/specialisms: Harry will be on the Committee as an Alopecia UK Trustee as well as representing the alopecia areata (universalis) patient perspective. Harry is interested in all areas of research that might further understanding of the disease and help lead to the development of effective treatments and ultimately a cure. Relevant weblinks: You can find Harry's Alopecia UK Trustee Profile link here.
Jen Chambers (AUK) Expand Profession: Alopecia UK Charity Development Manager Research areas of interest/specialisms: Specialisms: Psychology Art Psychotherapy Areas of interest: The mind and body - how they work together and the impact one can have on the other The biology of emotion - the physical impact that emotion can have on the body Brain development & coping mechanisms Psychosomatic disorders Healing capabilities of the body and the individual conditions needed for this Work/academic background: Academic Background: Psychology with Health Studies BSc (Dissertation - 'Alopecia & Identity') Art Psychotherapy MA (Dissertation - 'Alexithymia & Art Psychotherapy: Exploring the case for the use of art psychotherapy with alexithymic individuals focusing on those with somatoform disorders') During Jen's five years of studies she researched alopecia and included it in projects as much as her tutors would allow. This left her with a keen interest in the relationship between mind and body. Alopecia background: Jen has had alopecia areata since 1995, developing it at the age of 11. This progressed on to universalis, regrowing by the age of 16, but then all going again at the age of 20. Her current status is somewhere between alopecia totalis and alopecia universalis. Work background: Jen has been with Alopecia UK since 2012, first as a volunteer and working up to Charity Development Manager. Prior to this she had various job roles, the most relevant one in this instance being that of Participation Worker. Jen is keen to ensure the voices of those with alopecia are heard at all levels within Alopecia UK however particularly so when it comes to alopecia research. Jen wants to ensure the charity develops methods of including the patient perspective and getting research projects off the ground that those with alopecia want to see happen. Relevant weblinks: You can find Jen's Alopecia UK profile here.
Karen Green (AUK) Expand Profession: Retired Teacher Relevant organisations/institutions: Alopecia UK Trustee & Chair of Research Committee Research areas of interest/specialisms: Areas of interest: understanding the microbiome in the gut, controlling inflammation by diet. Work/academic background: Karen will be on the Committee as an Alopecia UK Trustee as well as being the Chair of the Research Committee. Having developed Alopecia Universalis at the age of 52 Karen will also be representing the patient perspective. Karen became involved with the first alopecia charity dedicated to research (AAR-UK) in 2012 after a year of searching for answers and finding none. Upon merging with Alopecia UK in November 2017 Karen is pleased to be able to continue the work done at AAR-UK, playing a part on the newly formed research committee. Relevant weblinks: You can find Karen's Alopecia UK Trustee Profile link here.