Jackie Tomlinson is stepping down as a Trustee of Alopecia UK after more than a decade with the charity. As we say farewell to her, she tells us about her time with the charity……
“I first found Alopecia UK in 2005 when I lost all of my hair and stumbled across the charity on the internet. I did this at work as home internet hadn’t really kicked off - WIFI/4G was unheard of! I ventured onto the Alopecia UK ‘discussion forum’ and found like-minded individuals with stories to share and tips to pass on. There was a lot of media interest around that time, as Gail Porter, was hot in the headlines, losing her hair in the same year as me. I did my own bit to raise awareness by participating in articles in Boots’ health magazine, Cambridge Evening News (both in print and local TV) and I was even included in a centre spread in the Daily Mirror! In all my media work I always linked back to the charity.
Contacts and friends grew within the discussion forum and one person in particular was fundraising by running and was also looking for help to start a local support group in Cambridgeshire. At that time, I was a keen marathon runner and I had got a place in the London marathon (ballot) and we joined forces to raise money for AUK.
I approached the charity to receive banners, flyers, collection buckets – anything, as we had arranged a charity stand at a local shopping centre to collect money. I had a phone call with Ruth Bowdage, who said the charity had one banner for my table and we’d have to meet in London to exchange it. This was really to check me out, as the charity had sadly had several individuals raise money for them but never actually handed the money over and they didn’t have the man power to do anything about it.
We met in a London train station for a coffee and exchange of the banner. After the formalities and general chit chat we discussed the charity some more. It was clear that the charity was a very small and run on a shoe-string with an annual income of less than £10,000. Volunteers had stepped forward but thought Alopecia UK was a big charity like ‘Cancer Research UK’ and would want to come along to the charity’s office to do admin. When in reality it was Ruth & Paul Bowdage’s spare bedroom. I can remember Ruth asking if I’d like to get more involved as they wanted new people to help run the charity and were struggling to cope with the day to day activities. She invited me along to their next committee meeting.
Later that evening recalling my day to my boyfriend Tony (now husband) about this – his words were ‘You might as well do something productive from all of this’. Hmmmm…..this swirled around my brain and gave me a wake-up call.
I became a committee member and then a Trustee in 2010. I started to moderate the discussion forum, look after membership, which was very admin heavy (pre electronic records!) and support emails. Whilst also helping out with the East Anglia support group and where I met Helen Wallwork who later became a Trustee too.
Around this time I spotted a new discussion thread from a photographer seeking permission to look for models with hair loss as he had a keen interest in body image. Knowing that the charity could really do with new positive images (as we were updating the website) I got in touch with the photographer, Daniel Regan, and applied for funding and ‘The Alopecia Project’ was born. When new members joined and lived within commuting distance from London, I would send them details of the project. The project has grown and become a great success with two exhibitions and a publication.
In 2011 I got on a plane (self-financed) and flew to Jerusalem. I’d come across an organisation called the ‘European Hair Research Society’ and as the charity and the community wanted research to develop treatments, I decided to learn more about that organisation. I was actually quite terrified, not knowing who was going to be there. It was also a difficult time for us as a family as my husband’s father was terminally ill. The week leading up to that conference I was torn as he had been admitted to hospital, but my husband insisted that I go whilst he stayed (the original plan was to travel together). Luckily, a volunteer from London who was in Jerusalem the week before stayed on a few days to come along to the social events and we met with a support group from Jerusalem together.
At the first coffee break, I was surrounded by the World’s leading researchers, immunologists, dermatologists, geneticists and clinicians, wondering what on earth I was doing there! A tap on the shoulder and there stood Professor Andrew Messenger & Dr Paul Farrant, who I had met a few months earlier at the British Association of Dermatologists’ offices, as I was the patient representative for their review of ‘The guidelines for the management of alopecia areata’. They kindly whisked me around the room introducing me key people within the organisation. Everyone was absolutely delighted that I had attended and was representing Alopecia UK.
The President took me under her wing and soon I was meeting people whose work I had read in academic journals (Prof Angela Christiano, Prof Valarie Randle, Prof Andrew MacDonald) and by the end of the conference, not only was I dancing with them at the conference dinner, but I was invited to join as a EHRS member. Little did I know at that time, that I would be an opening speaker at the World Congress for Hair Research in Edinburgh in 2013 a few years later or I probably would have run a mile! But everything I have done for the charity has been to raise the profile of alopecia and ultimately try to improve the lives of those with alopecia, even if some of my charity work has taken me out of my comfort zone!
In 2012 we needed more help with the governance side of the charity and finding practical ways to improve the day to day operations as the demand for service had outgrown the current organisation and our volunteer pool was dwindling. I had taken on more within Alopecia UK; writing articles, marketing, publicity, social media, sitting on the Dermatology of Council, BAD Patient Support Group, All Party Parliamentary Group on Skin Disease – all this on top of full-time work and a husband (mustn’t forget about him!). My entire spare time was focused on the charity and annual leave spent at conferences. The charity had, in my opinion, plateaued our and I had no more energy to give. Then two remarkable volunteers came along, Jen & Amy, who have made equally as many sacrifices for the charity. New Trustees came in too, as the original team also needed to focus on their work and family lives. Jen & Amy took the burden of day to day stuff away from me and new systems have been implemented. To a great relief, as I really didn’t want to see all my hard work, and the hard work of all the former Trustees, to be in vain and charity activities draw to a close.
With new and invigorated input, and if you surround yourself with passionate energetic go-getting type people, you do find that you have more to give. Over the last few years it has been great to step back and re-gain valuable ‘me time’. I have helped with projects like the Hair Loss Priority Setting Partnership and continued to network at conferences, finding opportunities for the charity and also help get Alopecia UK in a position to employ staff. When I think back to that night when my brain was swirling away and thinking why I should get involved with Alopecia UK, my main reasons were:
- We need paid staff to get things done properly
- We need premises, rather than spare bedrooms
- We need to support our support groups
- We need to raise more income to sustain any paid staff – too vulnerable being totally voluntary
- We need more awareness
- We need more research
- We need an annual conference
- We need ambassadors with a public profile
- We need more social events
- We need to win the lottery!
All apart from the last one have pretty much been achieved and work is still ongoing behind the scenes to achieve what I thought the charity should be back in 2005. Jen and Amy are about to open Alopecia UK’s first office – a big step but one that will allow them to continue the charity’s growth and ultimately increase the number of people the charity can help.
To get to this point hasn’t just been my input but all the past and present volunteers and Trustees too. The charity still needs volunteers to grow further and I’m confident people will continue to offer their time and skills.
I feel I have achieved everything I wanted for the charity and now is time to focus on me and my family. It feels great that I am stepping down when the charity is in a strong position with fabulous staff. I believe we need new and younger people to continue to get involved with the charity. This world evolves at a tremendous pace! In just this past decade I’ve gone from Faxing to Whatsapping, from GIFs to Vines – what next???
The future……I became a dermatology nurse just over 18 months ago and I’m looking forward to seeing where that takes me. I’m still passionate about research into alopecia and I have no doubt that this will call me back to some charity involvement but for now I am looking forward to well earned rest.
There have been so many wonderful moments with Alopecia UK and some fantastic opportunities along the way. It truly has been a whirl, hard work, but a whirl!
Have passion - take action.
We think it’s fair to say Jackie certainly lived up to the motto of having passion and taking action! Alopecia UK, and the alopecia community as a whole, is very lucky to have had Jackie as a passionate advocate for change over the past few years. She has put her heart and soul into Alopecia UK over the past decade and we’re so grateful to her (and Tony) for everything.
We wish Jackie all the very best in her career as a dermatology nurse and know she will be a compassionate and patient-focused nurse. We hope she learns to put her feet up and enjoys extra social time with Tony and the rest of her family and pets!
Thank you Jackie from everyone at Alopecia UK and everyone who you’ve helped in your time with the charity x