We think it’s important to share what a week like this unexpectedly eventful one means for a small charity like Alopecia UK.

In case you’re reading this and wondering why our week was ‘unexpectedly eventful’, alopecia was brought into the public eye after Hollywood actor Will Smith jumped on the stage and slapped comedian Chris Rock at this year’s Oscars ceremony. A joke from Chris suggested Will’s wife, Jada Pinkett Smith (who has previously spoken of her struggles with alopecia), could star in ‘GI Jane 2’, a role for which Demi Moore famously shaved her head.

By 10am on Monday morning, we had our reaction to the events published on our website in the form of this blog post (which we recommend reading for our thoughts on what took place). 

We feel it is worth mentioning at this point, Alopecia UK does not have a media team. Or a communications team. Alopecia UK is run by 7 members of staff (only 3 of them working full-time) delivering our aims of Support, Awareness and Research. Whenever a news story appears that has an alopecia angle, we try our best to ensure accurate statements about alopecia are made, the psychological impact is heard and that ideally some signposting to Alopecia UK is included. Getting a media statement and blog post out in such a short amount of time was no mean feat!

In the past, we have seen our fair share of media storms but this last week has been a media HURRICANE. The phone was ringing non-stop on Monday and Tuesday, but instead of people looking for alopecia support, it was journalists and producers wanting words from us. We lost track of how many calls and emails we received but believe we dealt with more than 70 media requests. There is A LOT of work involved in getting that many journalists what they need. It also takes us away from the work we planned in for the week and we must pick and choose what can wait! Our CEO Sue, who has only been in position a matter of months and was returning to work following a week of annual leave, spent the entirety of her working days on Monday and Tuesday dealing with media enquiries.

We had to chuckle to ourselves when one media outlet introduced their piece about the Oscars incident with “It’s the kind of exposure groups like Alopecia UK can only dream of”. We want to put it on the record right now, this was NOT a dream awareness opportunity! Let us explain why. It has been a battle to get alopecia, and its psychological impact, to be the focus of any discussion. The Oscars incident had so many layers to it and there have been lots of discussion points including violence, toxic masculinity, race, when is a joke not a joke etc.

This was not an ‘alopecia story’, demonstrated by our CEO Sue being asked questions such as: “Would you husband have hit Chris Rock?” and “What was worse, the joke or the slap?”. These are not questions that a CEO of a national alopecia charity should be fielding!

Whilst we cannot speak for every individual affected by alopecia, we do try to speak for the community, as a whole, that we serve. This week, we have seen a community that has been deeply affected by the news events, regardless of the opinions held about the joke or the resulting violence. There has been an outpouring of posts and comments in our private Facebook group from people affected by alopecia who have been hurt and upset this week. People who watched Jada’s face as the comment was made and were taken back to the various jokes they have encountered over the years. Members of our Youth Voice Board have told us how it’s been overwhelming to be in school this week as ‘the student with alopecia’ when so many opinions are being thrown around. People have told us that it has been hard to see their friends share opinions about Jada’s hair loss which they have felt have invalidated their own feelings too.

But members of our community have also told us that alopecia being in the news as widely as it has, gave them the confidence to speak about their own hair loss for the first time. We have seen some inspiring stories and experiences being shared. We have been impressed at the number of people who have put themselves forward to take part in TV, radio and printed press opportunities.

Men in our community have told us that because this latest story is about a woman with alopecia, it adds to the narrative that alopecia is a problem for women and not for men. We have for a long-time challenged media organisations who come to us for case studies and only want to tell stories of female hair loss. We know this perpetuates the myth that hair loss is only challenging for women and girls when we know that there are many men and boys who struggle with alopecia. The men speaking with us this week aren’t wishing to diminish Jada’s experience but are highlighting that as this most high-profile of stories focuses on a woman affected by hair loss, so it follows that the media surrounding it is telling the story of alopecia in women. This has been echoed by the media organisations asking specifically to speak to women affected by hair loss.

As you can see, there has been A LOT for us to unpack this week. This has been a complex and intense week with emotions running high. We are proud of how our small charity has weathered the storm (hurricane!) and incredibly proud of how much alopecia awareness we have contributed to this week, even if it has been a bit of a battle to get the dialogue focused on alopecia! Most of our staff team are individuals affected by alopecia themselves and they have had to process their own thoughts and feelings about the week’s events. Most of all, we are proud of how the alopecia community has come together in the past month, not just this week but also following the tragic news of young Rio’s passing.

This week has not been a ‘dream’ awareness opportunity, but it has not been a nightmare either. There is much to feel positive about. We have developed further media contacts who we hope we will be able to come back to when we have a story to tell. There will be things we want to shout about this year, our Charter for Best Practice for NHS Wig Provision being just one example. Sue has also had chats with journalists who want to do wider awareness pieces with us later this year. This is exciting and encouraging and should really help to further our Awareness aim. We also look forward to playing our part in raising awareness of the experience of men with alopecia as we develop further resources for men this year.

Our blog post about the events at the Oscars received more views than any other blog we have ever shared. This week we have gained followers on social media, welcomed new members to our online peer support spaces and had more people register to our newsletter. We hope this means that more people than ever before will, perhaps because of what happened in Hollywood, be able to access the resources offered by Alopecia UK that can hopefully help them to live happily and confidently with alopecia.

We are happy that we are now moving away from the talk about the Oscars incident and getting back to talking about what we can do to reduce the stigma around hair loss and improving the lives of those affected by alopecia which, let's be honest, is what is important.

We would like to end with a reminder that most of our funding comes from individual donations from the friends and families of those affected by alopecia. There is no hidden philanthropist in the wings supporting us, no big corporate partner and no government funding.

You can help Alopecia UK to continue our valuable work by making a donation today

Thank you.

(Photo credit: Image taken from Canva)