Who am I?

Jen is Alopecia UK’s Charity Development Manager.  Jen began volunteering with Alopecia UK in 2011 and became the very first paid member of staff at the charity in 2014.  She lives in Cumbria with her dog, Gizmo.  She enjoys walking fells in the nearby Lake District, biking and travel.  Jen first lost her hair in 1995 at the age of eleven. 

Jen's background:

Before working for Alopecia UK, Jen worked in the charity sector.  Roles involved supporting children and young people through youth/play work and art therapy work in a variety of settings including youth clubs & schools, project managing 12-week inclusion programmes, improving service provision at board level through participation, event organisation, bid writing and supporting adults with additional needs.  Alongside much of her work experience Jen was also studying for her Psychology with Health Studies undergraduate degree and Art Psychotherapy Masters.  Whenever possible Jen would incorporate the topic of alopecia into her essays and research projects in order to allow for further learning and understanding.  This included things like non-verbal behaviours, social discrimination, the benefits of art psychotherapy for those with alopecia and how it can help trauma, coping with alopecia and self-efficacy.  Dissertation projects focussed on alopecia & identity and alopecia & alexithymia.  The undergraduate degree also equipped Jen with a great base understanding of research, both how it actually works (on the psychology bit of the degree) along with an understanding of the systems it works within (on the health bit of the degree). 

Jen at Alopecia UK:

Jen works across the whole charity, working with the Staff, Trustees and Volunteers to ensure the charity delivers across its aims of support, awareness and research.  It is a varied role and presently can involve anything from strategy development to supervision sessions with staff members and supporting them with the delivery of their work, funding bids, reports for funders and trustees, campaign development, recruitment, and liaising with other organisations… to name a few!

Over the years Jen has worked on many things.  Jen used to lead on events including the Liverpool Flash mob, several Alton Towers trips and five Big Weekend events.  She co-ordinated a lot of the Hair Loss Priority Setting Partnership process and has brought thousands of pounds of funding in through bids.  She supported extensively on the mergers with Autoimmune Alopecia Research UK and Helping Alopecia Trust.

Why Alopecia UK?

“I remember interviewing one lady for my dissertation, in 2007, who had alopecia for 40+ years.  As she was talking about treatments, attitudes and how she felt when she was younger, I was thinking, ‘absolutely nothing has changed’.  I couldn’t understand why and it made me a bit angry but then I realised I was carrying an assumption, that perhaps we all have, that people are out there working on finding all the answers and fixing everything without me having to really do anything. 

Another key stand-out moment during that time in my life was a conversation with the founder of a previous alopecia organisation that was around when I was younger.  She was telling me she was closing it down as ‘after 25 years I feel like I’ve done my bit’.  I remember feeling shocked as you assume things like that will always be there.  But they are not.  I’ve seen a few alopecia organisations come and go in the 25+ years that I’ve had alopecia.  Someone once said to me, ‘Jen, a voluntary run organisation will only last as long as the enthusiasm of that volunteer’.

I mention all of the above as it underpins the ‘Why Alopecia UK’ for me.  These conversations have always stuck with me.  They are why I’m passionate that there needs to be change, they are why I’m passionate that we, the alopecia community, all need to work together and focus our support in a way that enables long lasting change. This long lasting change, for me, is the continuous development of an alopecia organisation with staff, structures and a sustainable approach.  An organisation that truly listens to the needs of those with alopecia, in order that the organisation keeps growing and developing within aims of Support, Awareness and Research, for the benefit of all affected by alopecia. 

For me Alopecia UK was the obvious choice to put my energy into.  There is so much involved in running a charity, it makes no sense to repeat that multiple times.  I wanted to support what was already in place and build on it which is exactly what we have done.  It has been great to keep welcoming more and more people to the team and just watch the charity continue to strengthen and grow.”

Jen's favourite inspirational quotes:

We must be the change we wish to see in the world. (Gandhi)

Alone we can do so little; together we can do so much. (Helen Keller)

Publications:

Regan, D. & Chambers, J.  Alopecia Uncovered (2014)

Bhargava, K, Fenton, D, Chambers, J, & Tomlinson, J (2015) Alopecia areata and its impact on young people.  Dermatological Nursing 14(1): 24-31

Jen in the media:

Jen has appeared in various media over the years to speak about alopecia with TV appearances including ITV and BBC.  She has featured on many radio stations both national and regional across the country including Radio 1 and Radio 5 Live.  There have been various awareness stories that made it into national and local newspapers, magazines and online platforms.  Awareness raising opportunities have been many and varied, at one point Jen popped down to the BBC studios to do a Facebook Live with them while getting a Henna Tattoo!  She even took part in a dating show featuring those with a hidden difference that was commissioned by Discovery Communications and went out around the world.