For the past 10 years I have had the pleasure of knowing someone who has been instrumental in developing Alopecia UK to the charity it is today. Someone who despite her own personal challenges with alopecia, which she has had since the age of 11, has been passionate about ensuring that there is an organisation that those who are struggling can turn to. That someone is Jen Chambers, my colleague for the past decade, who is leaving the staff team to use her skills and tenacity to help develop another charity. I felt it was important to properly reflect on Jen’s time at Alopecia UK so here we go...

Where it all began

When Jen lost her hair at the age of 11, it had a huge impact on her. There were emotional hurdles to overcome and challenges within school. All this was navigated without there being an alopecia charity that Jen and her parents could turn to. Alopecia UK was not founded until 2004, a full decade after Jen had lost her hair. When she was younger, Jen had been in touch with an organisation called ‘Hairline International’ which arranged occasional meetings for those affected by hair loss but other than the odd meeting, perhaps once a year, there was little else happening. On reflection, Jen wished there had been a charity working full-time on things that would help people like her.

When Jen studied psychology at University, the focus of her dissertation was alopecia. It was around this same time that Alopecia UK started. Founded by Vicky Rees (nee Spencer-Bowdage), the charity began simply as a website ‘Alopecia Online’. Vicky recognised there was very little trusted information about alopecia on the internet. In these formative foundation years of Alopecia UK, it was Vicky and her family who acted as Trustees and Volunteers, bringing in some additional Trustees too.

How did Jen get involved with Alopecia UK?

As you may imagine, Jen was excited to learn about an alopecia charity starting up. After a further two years of studying for a Masters in Art Psychotherapy, which involved further study of alopecia and a lot of personal therapy and self-reflection, Jen was able to let go of a lot of the hurt that her alopecia had brought. She got in touch with the then founders of Alopecia UK to find out if anything she had learned could help. What she found was a wonderful team of people passionate about helping those with alopecia but who were struggling to take the charity to the next stage. The founding team had done a great job in getting things off the ground, all in an entirely voluntary capacity.

Expanding and developing services and resources was challenging though, especially when at this point those involved in the charity were feeling a level of volunteer-fatigue and their lives had moved on in terms of starting families and having careers. Remember, Alopecia UK was a ‘spare-time’ thing and being squeezed in around busy day-jobs. Jen immediately had thoughts around what could be achieved if there was a team of people working full-time on the charity. The resources that could be developed, the events that could be introduced, the support provision that could be expanded, the awareness that could be raised, and, maybe with enough income, the research that could be undertaken.

A meeting of minds

I first met Jen in May 2012 at a photography exhibition, ‘The Alopecia Project’, showcasing some portraits by photographer Daniel Regan. The event was advertised by Alopecia UK and Jen was one of the Project’s models. I didn’t really speak to Jen much at that event, but I believe names were exchanged and we found each other on Facebook. Jen and I stayed in touch that year and later attended an event organised by an alopecia organisation around at the time called ‘Be Bold’. Somehow, we agreed to share a room despite barely knowing each other (frugal folk from Cumbria and Yorkshire clearly not wanting to pay for a room each!). It was at this event that Jen and I got to know each other a bit more. She told me she had recently connected with the Alopecia UK Trustees earlier that year and, having attended a couple of meetings, she wanted to get much more involved. Jen explained her visions of people working on an alopecia charity full-time and there being much more available for those with alopecia. I was always impressed with Jen’s ambitious plans and her firm belief, that she has never wavered from, that those with alopecia deserve a dedicated organisation working on their behalf.

Something we both agreed upon was how dismissed the condition appeared to be in so many circles – medical, research and public awareness - and how things could, and should, be different. I had myself started an e-petition to try to appeal for there to be more research into alopecia. It was quite a naïve attempt to instigate change, but I think Jen recognised that if I was someone willing to do something off my own back, I might be prepared to get involved with the charity. Jen invited me to attend the next Alopecia UK Trustee meeting, which was the following month. In typical Jen style, she just made things happen. I’m not sure I’d ever met a more determined person than Jen. She saw in me, something of the passion and enthusiasm that she had herself for improving and expanding resources for those with affected by alopecia. I left that Trustee meeting in November 2012 with a list of things I was to do!

‘Leap and the universe will catch you’

When Jen and I first got involved with AUK, we both had full-time jobs away from the charity. Alopecia UK was ‘fit it in where possible’ stuff - evenings, weekends, lunchbreaks; it was full on! But for the two of us, the more we did, the more we wanted to do. And the more we did as a charity, the more people expected of Alopecia UK. Our charity motto at the time was ‘Have Passion – Take Action’ and we were both certainly had the passion for improving provision for those with alopecia. There were changes amongst the Trustee team as some founding members handed over to new Trustees. Jen left her job in mid-2013 to focus solely on Alopecia UK and moved back in with her parents in Cumbria to make this happen, packing up her life in Liverpool. Jen volunteered for a few months, making things happen with her ‘can do’ approach. With the support and dynamism of AUK’s then Chair, Jackie Tomlinson, Jen became the first paid-resource for Alopecia UK in early 2014. Notice how I don’t say staff member. That would follow later. The move to paid staff was a gradual one and in those early days it was a case of covering some basic living expenses.

Jen came to see me in Leeds later that same year, I think she’d come to one of my support groups I was hosting in the city. I distinctly remember us having a conversation in which I said that I would love to commit to the charity full-time and be able to do so much than I was able to do in my volunteer capacity. It would frustrate me there was only so much that could be done in a voluntary capacity on top of another full-time job. ‘Leap and the universe will catch you’ was Jen’s very Jen response! Up to that point, Jen had been getting stuff happening. She had run the Mersey Tunnel 10k in the summer of 2013 as a fundraiser (her first time ever in public without her wig), organised the September 2013 Flash Mob in Liverpool (a transformative and life-changing for many who took part) and pulled together our first Alton Towers event in 2014. Remember, all the time that Jen is creating new resources, events, writing pages for our website and taking part in media articles etc, she is pushing herself out of her comfort zone and navigating becoming a more public figure with alopecia after many years of not telling others about having the condition. When I think about this, it makes it even more impressive.

Inspired by Jen, I made the leap. Scary stuff to give up a job with a comfortable income to not even having an employment contract – that would come 2 years later – but if Jen could do it, so could I, and I didn’t even have to move back in with my parents!!

The Jen and Amy ‘Development’ Years

And so began the era of Jen and Amy. Of course, it wasn’t just us. We had a team of Trustees and volunteers supporting us in the wings. But it was just the two of us working full-time. We became the visible faces of Alopecia UK. We were so encouraged by the alopecia community who hopefully saw in us a couple of people prepared to roll up their sleeves and say, ‘We deserve better’. The more we met amazing people with alopecia, the more inspired we became to go further with the charity’s aims of Support, Awareness and Research.

Anyone who has met both of us will recognise that we are very different people. Some might suggest we’re like chalk and cheese. But on reflection, I think that’s why we worked so well together. We may have had different opinions on MANY things over the years but our passion and enthusiasm for improving the lives of those affected by alopecia is what united us as a strong team. A dynamic duo, a plucky pair. We expanded our support group network, increased our support and advice resources, introduced our Big Weekend event, moved all our charity ‘stuff’ from our spare rooms into our first office, widened our awareness reach and began expanding into the area of research. Our new Chair Simon, provided us with brilliant encouragement and support allowing us to take risks and get new ideas off the ground. 

As Jen took on the role of Charity Development Manager, she focused on ensuring that Alopecia UK had the infrastructure needed to develop new staff roles to further expand the services we could offer to those with alopecia.

The Next Chapter

Jen was always clear that she did not want Alopecia UK to be her life’s work. She had originally said she’d stay until her 35^th birthday. Well, we got another three years out of her, and she has decided the time has come to use her skills to help another charity. In my new colleague Sue, Alopecia UK has found a CEO with the passion and determination to make the world a better place for those with alopecia, along with the leadership and strategic skills to give Jen the confidence to walk away knowing that the charity is in safe hands. Jen has shared her own reflections on her departure in this blog post here.

I will miss Jen enormously. We have worked so closely together for the best part of a decade. We have pushed ourselves out of our comfort zones so many times and had lots of ‘WHAT ARE WE DOING?!’ moments. Steep learning curves as two young women took on the task of running a national charity. I am so proud of what we have achieved together. We are now a team of six and in a good position despite the challenging circumstances the world has thrown, and continues to throw, at us. I am so grateful that Jen got involved all those years ago. She has done so much for alopecia support, alopecia awareness and alopecia research. Her new colleagues are very lucky to have her. I am excited for Jen in her new role and excited to have Sue join our team as she is already doing great things.

This is farewell not goodbye. Jen is a firm friend to all at Alopecia UK and as someone with alopecia herself (and a regular donor!) I know she will be keen that the charity continues to do the valuable work it does, and that there is always an organisation in the UK that those with alopecia can turn to.

Jen, my friend, you did good. Hang up your blue hoody for now, but make sure you bring it back and join us at an Alopecia UK event in the future. On behalf of everyone in the alopecia community, thank you! X

If anyone would like to use the event of Jen’s departure from Alopecia UK as an opportunity to leave a one-off donation, or perhaps become a regular donor like Jen (and the family members whose arm she managed to twist – thank you Chambers Family!), we know she would be delighted for you to do that (as would we!).

Visit Jen's Farewell Fundraiser here