News & Events Events All Speakers TALKS Session 1: Introductory Session Simon Ray Simon is the Chair of the Trustee Board for Alopecia UK. Simon first got involved with Alopecia UK in 2013, following on from his wife, Anne, developing alopecia. Simon swam the the English Channel raising thousands of pounds for Alopecia UK. He plays an active role, attending our own events and representing the Charity in external meetings and conferences too. From the very beginning, Simon has been passionate about ensuring that those with alopecia have the best possible experience they can during what is often a very challenging time. He has contributed to Alopecia UK's work to improve GP experience and NHS wig provision. Simon has brought a wealth of knowledge and experience to the Board of Trustees that has helped strengthen up the Charity as it has moved from being a predominantly volunteer run Charity to one with staff and a head office. Jen Chambers Jen is the Charity Development Manager for Alopecia UK having been with the Charity, initially as a volunteer, since 2012. Jen has taken a key role, alongside colleague Amy Johnson, in developing the Charity and moving it forward from a completely volunteer-led organisation to one with six employees & a head office. Jen has led on many of the Charity's national events, research involvement and overall structuring of the charity. Jen is passionate about getting the voices of those with alopecia heard and ensuring that Alopecia UK is a needs led organisation with this underpinning all of its workstreams in support, awareness and research. Prior to joining Alopecia UK Jen researched alopecia throughout her Psychology with Health Studies undergraduate degree as well as in an Art Psychotherapy Masters degree. Her previous job roles equipped her with experience in events & project management, participation and the Charity Sector. Jen first developed alopecia aged 11 and has experienced various forms of alopecia areata through to alopecia universalis over the last twenty-four years, currently experiencing alopecia totalis. Amy Johnson Amy is Alopecia UK’s Communications Manager. She started volunteering for Alopecia UK in 2012 and left her former job to help Jen develop the charity. Being a small charity team, Amy has always had her fingers in many pots including Alopecia UK’s communications (social media, newsletter, supporting media enquiries), fundraising, bookkeeping and accounts. Amy helped to develop an e-learning module with the Royal College of GPs and has undertaken work, including a published report, to try and tackle the inequality of wig provision in the NHS. Amy started the Leeds Alopecia Support Group in 2013 and continues to hold support meetings. Amy also leads the Yorkshire Kids and Birmingham Kids groups. Amy lost all her hair in 2010. After nearly two years of alopecia universalis, Amy has had different degrees of regrowth over the past 7 years. Serica Hunter Serica currently works as a secondary school science teacher. Her hair loss was very slow and progressive occurring over a 10 year period. Serica covered her hair loss up for over a decade, seeking help as she could no longer manage on her own. She was diagnosed 3 years ago with scarring alopecia caused by lichen planopilaris and sought support from the Alopecia UK Birmingham Support Group. Serica is now coming to terms with her hair loss, becoming a brand ambassador for a headwear company, and has also recently started a blog that documents her journey retrospectively (baldisbeautiful.health.blog/). Serica is also about to have a big reveal of her condition at work and raise some much needed awareness with her students and colleagues. Amy Harmsworth Amy is a volunteer for Alopecia UK and has helped to run and facilitate the London Support Group for both adults and children for the past 3 years. Amy was first diagnosed with Alopecia Areata when she was 10 years old. Amy found growing up with Alopecia challenging at times but learnt very quickly that it was not going to stop her from doing any of the things she wanted to do. Growing up she learnt a lot about personal strength and always thinking about others, which she now appreciates and thanks her alopecia journey for. She has had some experiences of re-growth but right now has Alopecia Universalis, losing all hair, including eyebrows and eyelashes. Session 2: Alopecia Areata - Overview & Q&A Teontor Simakou Teontor Simakou is the lead researcher on a project at the University of the West of Scotland studying the effects of nanovibrational stimulation on immune cells. He has just completed, and had published, his literature review in which he has been scoping out the Alopecia Areata research landscape. This means he has all the latest information on the theories currently out there about alopecia areata - what it is and what might be causing it. Dr Matthew Harries Dr Matthew Harries is a Consultant Dermatologist and Honorary Senior Lecturer with a specialist interest in hair and scalp disorders. He was awarded a PhD from the University of Manchester for his research into the hair’s immune system in scarring alopecias. Matt is a member of Alopecia UK's Research Committee. He is also the British Hair and Nail Society's Committee Member for Research and also sits on the UK-Dermatology Clinical Trials Network steering committee. Session 3: Other types of hair loss including Androgenetic & Scarring Alopecias - Overview & Q&A Dr Anita Takwale Dr Anita Takwale is a Consultant Dermatologist and Clinical Lead for the department of dermatology in Gloucestershire. She is the President of the British Hair and Nail Society and the South West UK regional expert for hair and nail disorders. Her clinics provide a secondary and tertiary hair and nails referral service. Outside of the UK, she is a member of the European Hair Research Society and European Nail society, has worked on hair cases in Australia and nail cases in Belgium . She has attended World Congresses for Hair Research in Japan and Barcelona as well as the International Congress on Nails in Athens. She regularly reviews hair and nail papers and has published articles discussing hair loss and nail pathology in multiple peer reviewed journals. Frequently, Dr Takwale is invited to speak at various events on a regional, national, and international stage. Dr John Gray Dr John Gray trained in medicine in London and for many years was a Family Practitioner during which time he developed a special interest in hair and scalp disorders. He has published widely on hair loss affecting men, women and children and the impact it has on patients. He continues as a Consultant to the Hair Care industry on all aspects of hair. He is a member of several Hair Research Societies and an elected member of the European Academy of Dermatology. He has been inducted into the Institute of Trichology as an Honorary Fellow in recognition of his long service to hair science. Session 4: Alopecia & Me Session Speaker: Nick Sharratt Nick is a research fellow at the Centre for Appearance Research (CAR), a World leading research centre focusing on the role of appearance and body image in people's lives and which conducts high quality, applied psychological research. Having previously qualified and worked as a solicitor Nick completed a post-graduate conversion Diploma in Psychology with the Open University before undertaking an MSc in Health Psychology at the University of Bath. In 2014 he then joined CAR to begin working on a PhD. Earlier this year, he submitted his PhD, which explores the intersection of appearance altering or disfiguring conditions ('visible difference') and romantic relationships. Nick is now working on developing materials to assist those with a visible difference in their romantic lives. Discussion Facilitator: Kerry Montgomery Kerry completed her PhD (Title: Mindfulness and psychosocial distress in visible skin conditions) in 2017. Over the last six years Kerry's work has focused on the psychosocial impact of skin conditions, with a particular interest in alopecia, whilst looking at what support would be beneficial to help people who are experiencing distress.In 2008 she started work with the Improving Access to Psychological Therapies Service, an NHS initiative to increase access to talking therapies to those experiencing anxiety and depression. Working alongside GP’s she provided guided self-help (based on cognitive behavioural therapy techniques) to people with anxiety and depression.Kerry has worked with Alopecia UK over the last five years presenting at events and running workshops, all the while increasing her knowledge of the impact of alopecia and what interventions could support people. Kerry is now Alopecia UK’s Support Project Manager. Guest speaker 1: Harry Brunt Harry Brunt is one of Alopecia UK’s Trustees. When Harry was 18 he noticed the first bald patches on the back of his 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 he had lost virtually all the hair on his head. After shaving what was left of his hair, Harry decided to try and do something positive and raise money for Alopecia UK. In January 2014 he committed to a month long ‘Dryathlon’ to raise money for Alopecia UK – a challenging but rewarding experience! Harry kept in touch with Alopecia UK and it didn’t take long before he was being propositioned and encouraged to become a Trustee! Guest speaker 2: Naomi Hall Naomi is Alopecia UK’s Charity Administrator. Having met Amy and Jen in late 2016 she expressed a keen interest in a job with the charity should the occasion ever arise. After a stint of travelling that very opportunity presented itself, joining the team in February 2018. Naomi has had alopecia areata since 2014. Her hair started falling out quite rapidly and within around 6 weeks her alopecia had progressed to alopecia totalis, which over the next few months developed to alopecia universalis. In late 2016 she saw some minor regrowth happening that continued into a full head of hair…. and then the patches came again. Naomi has experienced all versions of alopecia areata and continues to go through cycles of loss and regrowth. Guest speaker 3: Jo Tucker Jo Tucker first noticed a bald patch in December 2017. The hair loss rapidly escalated to alopecia totalis, in around 2 weeks, and then progressed to alopecia universalis by March 2018. She started an Instagram blog @baldmothertucker to document her journey from the beginning. Which at the time she thought would be temporary. Jo uses the social media platform to talk about looking at the positives of living with alopecia universalis, sharing insight into her journey and her new found wig obsession. She is married with 3 young daughters, and wanted to prove to her daughters especially, that the hair-loss didn’t hold her back. Guest speaker 4: Nikky Odutayo Nikky discovered she had alopecia in her second year of university whilst her boyfriend was taking her braids out for her. It started as a couple of small bald patches the size of a coin but they rapidly grew and in the space of two months Nikky lost all of her hair. Nikky struggled for a long time to come to terms with what was happening to her and tried many things to get her hair back, all of which failed. Things got bad for Nikky to the point that she even attempted suicide. After being in hospital for three months Nikky came out with a new found attitude to help people going through what she had experienced. Nikky is now an inspirational speaker, entrepreneur, philanthropist and mentor. Session 5: Products & Services Michelle Moffatt Michelle lost her hair in 2015, and was diagnosed with Alopecia Universalis. Michelle began to use makeup and play with wigs and explore the world of alternative hair. Michelle now has a business selling wigs and has a YouTube channel (MicheMoffattBaldBarbie) focussed on wig education and reviews, alongside Alopecia hints and tips. Michelle also shares wig photos on her personal Instagram (@MicheMoffatt). Michelle has attended advanced wig training in the USA and wants to share some tips with others looking for support. Michelle lives in Scotland with her husband and four children, and is also an Intensive Care Nurse. Amy Johnson (See Session 1 above) Janan Farjo Managing Director at Farjo-Saks Ltd, a wholesale specialist for Hair Loss Cosmetic & Medical Products. Dedicated supplier of Toppik, DermMatch, HairMax, Revivogen, Help Hair & Revivogen. Dawn Forshaw Dawn’s passion for Permanent Make Up (PMU) began in 1996 when she founded Finishing Touches Group, originally as a clinic offering cosmetic and medical tattooing treatments. Dawn’s expertise in PMU, Scalp Micropigmentation and Medical Tattooing has resulted in her being a keynote speaker at leading industry conferences including BAAPS, BAPS, ORBS and BASO, as well as lecturing throughout Europe and the USA. A multi-award-winner, Dawn continues to be an industry leader with Finishing Touches Group who are leaders in training and product supplies for Semi-Permanent Makeup, Medical Tattooing, Digital Skin Rejuvenation, Scalp Micropigmentation and Tattoo Removal. Session 6: Alopecia Areata: Research Overview Discussion Facilitator: Professor Simon Milling Simon received his PhD in Immunology in 1996 from Imperial College, London. He then worked as a researcher in Philadelphia and Oxford. Simon took up a position as a lecturer in Immunology in Glasgow in 2007. He is a member of Alopecia UK's Research Committee. The work in his lab focusses on two areas, both involving the immunology of the intestine: basic studies of the functions of 'dendritic cells' in controlling healthy intestinal immune responses ; and more applied projects to understand potentially intestine-related inflammatory and autoimmune conditions. Discussion Facilitator: Matt Harries (See Session 2 above) Session 7: Support Options Dr Kerry Montgomery (See Session 4 above) Jen Chambers (See Session 1 above) Viv Allen Viv first got involved with AUK in 2010 and went on to found the Alopecia UK Dorset Support Group in 2016 having overcome anxiety, depression and post-traumatic stress, related to life experiences, including her experience of living with alopecia. Viv’s alopecia started as small patches at 13. In her twenties Viv began to wear wigs to cover up her baldness. Viv found counselling helped her to move from feeling bad about her baldness to feeling bold and beautiful. Now at 50, Viv keeps her hair shaved short as patches come and go. Viv has a degree in counselling and psychotherapy and is a master NLP practioner. In her private practice Viv supports women to live free from fear, to feel courageous enough to take action and to live a joy filled life, on your terms. Viv says “I am delighted to share with you my experience of counselling, in various forms, so that you may learn from it. My desire is for you to feel empowered to reach out for the kind of support that is right for you so that you can shine.” WORKSHOPS Workshop 1: Moving towards what you want from life and away from appearance concerns Fabio Zucchelli Fabio is a Research Associate at the Centre for Appearance Research, UWE Bristol. He is working as part of a team on a project funded by the Vocational Training Charity Trust (VTCT) Foundation to develop psychological support, training and public education on visible difference in the UK. Fabio’s primary research interest lies in the application of mindfulness-based therapies (such as Acceptance and Commitment Therapy) in improving people's body image and overall health and wellbeing. He also has experience of research in cleft, exploring the experience of health professionals and affected families.” Workshop 2: Informing another of your (in)visible difference Nick Sharratt (See Session 4 above) Workshop 3: Wonderful Me Doodle Workshop Toria Toria was diagnosed with Alopecia Areata aged 9 years old, when her hair began to fall out at primary school. She was teased and bullied by class mates and despite her hair growing back in time for high school, she never forgot the effect it had on her self-esteem. Over 25 years later, after a stressful period in her life, her hair began to fall out once more, slowly developing into Alopecia Totalis and eventually Universalis. Having always been a creative person, Toria found her way back to drawing and illustration, quickly realising it had a calming and positive effect on her mental health. She launched an illustration business in 2017 selling bespoke artwork and running workshops in her local community. Inspired by her childhood struggles, the workshops include well-being sessions such as the ‘Wonderful Me Workshop’ promoting positive self-esteem, self-worth and positive thinking. Having lived with Alopecia since childhood, Toria is passionate about using her direct experience of the disease and her own personal mental health challenges to make a difference to other people’s lives. She works with schools, clubs, companies, charities and individuals spreading joy and positivity in a fun, creative and memorable way. Sponsor Symposium Sponsor Symposium 1: Freedom Hair (Gold Sponsor) ' What can you do in a Freedom Wig' Deanna Beattie Deanna Beattie is the owner of Freedom Wigs. Freedom is based in New Zealand and would love you all to come have a listen and a chat with her at her workshop, "What can you do in a Freedom Wig" Deanna has been active within the Alopecia community for over 15 years, since her daughter, Libby, lost her hair at 12 years old. She is passionate about those with Alopecia and other hair loss conditions. Her goal is to provide the best prosthetic available to those dealing with long term loss, so they are able to have the choice to present how they would like to. "The day I watched my daughter walk away from me wearing her new Freedom wig, I knew I had to share this with as many people as I could".