This month, we say farewell to Simon Ray who has been a Trustee since November 2015. In that time, Simon has overseen some big changes within our small charity. But rather than us talk about his time with the charity, and his motivation for getting involved, let us handover to Simon to share his memories of his time with Alopecia UK..

"Although it seems like no time at all, it has been just over decade since my beautiful wife, Anne, started losing her hair. Everyone’s alopecia story is different but the emotional impact often has many similarities. We had spotted a few very small patches earlier in the year but in the end she went from everything to nothing (Alopecia Universalis) in the space of around 6 weeks. The reality is that nobody really knows what it is like to experience the devastation of alopecia unless you go through it first hand.   

I recall, very clearly, the lowest point for us was when Anne silently pulled fists full of unwashed hair from her head with tears in her eyesAt that moment, I knew we had to do something and so we quietly went upstairs locked ourselves in the bathroom and I helped her wash what was left of her hair; something she had been so scared to do for so long.  It was a heart-wrenching, but ultimately bonding, experience for us both as I continuously grabbed handfuls of wet hair from the sink and discreetly placed it in the binEventually we finished and Anne said that her previously permanent headache had already started to ease; we agreed that from now on we would, together, wash her hair as regularly as she used to. Suffice to say the hair loss continued until there was no more but somehow losing the last bits did not feel quite so traumatic. 

Thereafter, we started to learn about alopecia, wigs, eyelashes, micro-blading, etc. We found Alopecia UK fairly quickly and saw all the help & advice that was availableAnne, like so many others, had a really strong desire to speak to others who had been through the same experience and attended the local AUK group in Bristol.  

We then spotted an AUK event at Alton Towers. This seemed a fantastic opportunity to meet up with lots of people in the same position and also show support for the charity that had already given us so muchAs a lot of you know, it is a fantastic day and genuinely inspirational to see all those blue t-shirts and hoodiesAlton Towers has gone from strength to strength since then. 

Following the Alton Towers visit, I was interested in seeing if I could help the charity in any wayI had already done from fundraising for AUK but I wanted to know if there was anything more pragmatic that I could giveAt the time, Jen Chambers and Amy Johnson were running AUK on a voluntary basis and essentially lifting the charity up by its boot strapsHaving sent an email, Jen called me to discuss potentially becoming a Trustee and I think it is fair to say that she ‘grilled’ me for well over an hour!  Anyone who knows Jen will attest to the dedication and thoroughness she displayed in her time at AUK and it was a great indicator for what was to comeWe agreed that I could attend the next Trustee meeting..

I sat and listened at the meeting and gave some input on what I thought I could bring to charityJackie Tomlinson (previous Chair) had decided to step down and so I was offered, and accepted, a position as Chair of TrusteesIt was a proud moment for me and I really looked forward to what we could do as a small, national charity that had always, and continues, to ‘punch above its weight’. 

The following years saw a mixture of fun engagement (see pics from the Total Warrior event in 2017) and the serious business of building the charity's infrastructureOver the years that involved employing our first ever staff members (starting with Jen & Amy), setting up our first office, celebrating when things went well and taking the difficult decisions when requiredWe even embarked on mergers with Autoimmune Alopecia Research UK (AAR-UK) and Helping Alopecia Trust (HAT) that led to greater efficiencies, reach and an ability to increase our research spending markedly. 

So much has been achieved in the past 8 years and I am proud to have been involvedThe AUK employees (past & present) have given so much and also faced each new challenge with enthusiasm and professionalismNew skills have been learnt and I would hope they would all agree that their development has benefitted both the charity and themselves enormouslySir Isaac Newton, once said, “If I have seen further, it is by standing on the shoulders of giants.”  And if I have achieved anything it is by standing on the shoulders of our staff; the genuine ‘giants’ of AUK. 

The alopecia community is filled with wonderfully inspirational characters who give so much to so many othersWords cannot describe the impact of sharing your story as a confident person with alopecia with someone who is strugglingThat wider community is so important, not only as peer support but also because we, as Trustees, have always recognised that our fundraising abilities are largely encompassed by those who have first hand experience of hair lossTo be frank, unless you been through it you really don’t fully understandFor that reason, AUK has always been really grateful of the support our community has given financially. Thank you to everyone who has supported Alopecia UK during my time with the charity. Long may that community support continue.

Over the last few years we have taken on a significantly new Trustee Board bringing with it considerable experience in a wide variety of areasWe have a fantastic new CEO in the form of Sue Schilling who has picked up from where Jen left off. It was big shoes to fill but I know that she is more than a match for the challenges that lies aheadSue is an inspirational leader whose judgement is astonishingly sharpThe final piece was finding a new Chair of Trustees and I believe we hit the jackpot with Chris Philipsborn’s recent appointmentChris brings a wealth of experience to the governance of the charity and I am excited to see what the future will bring. 

I am so pleased to be able to step away from the charity in such a strong positionAt the last Big Weekend I took a back seat and watched in admiration as the new Trustee team worked brilliantly with our fantastic staff team to deliver our best Big Weekend everAt the end of the conference, I was filled with pride for the charity and a feeling of absolute certainty that AUK is in great hands for many years to come. 

So, now I am stepping away. I am happy to report that Anne is now in a great place, although there is still no sign of any hairIt is fair to say this experience has brought us closer together and if her hair ever grew back I know I would genuinely miss the ability to kiss her head (something she only allows me to do!)  We all know everyone’s journey is different but whatever that is for you, can I wish you well for the future and thank everyone of you for all the support you have given me and the charity over the last 8 years. 

I look forward to following the progress of Alopecia UK, and will continue to support with my monthly donation. I know how valuable these regular gifts are to a charity like Alopecia UK and I would urge anyone who values the work of this small but mighty organisation to consider doing the same.

Ta ta for now!"

We will miss Simon enormously. He has been instrumental in pushing the charity forward in the past eight years. Simon came to Alopecia UK at just the right time and we will forever be grateful to him. We wish him all the best for the future and hope to welcome Simon and Anne to one of our events in the future. 

If, like Simon, you would like to support Alopecia UK each month with a regular donation, you can set that up here.

Perhaps a tutu a month donation.. sorry, we meant £2 a month ...we have no idea where 'tutu' came from...

PS, whilst we could not resist including the above photo in our farewell to Simon, we feel he has been modest by leaving out that the start of his relationship with AUK involved him fundraising for us by swimming the English Channel! So we thought we'd remind everyone of that incredible achievement, after posting the tutu and goggles photo of course! x

PPS, if you would like to become an Alopecia UK Trustee we currently have vacancies on our board! We are recruiting a new Treasurer, and also looking for new Trustees to join the Board too. Find out more about the Treasurer vacancy here, and wider Trustee recruitment here