Reverse Rett is a UK charity driving treatments and a cure for Rett syndrome into the lives of everyone affected. Altrincham HQ have worked with Reverse Rett since 2020 supporting them with social media training to maximise their reach, engagement and fundraising.
In this case study we go indepth about social media for charity
1. Firstly tell us a little about Reverse Rett as a charity and what your big goal is
Reverse Rett is a UK based charity driving treatments and a cure for Rett syndrome into the lives of everyone affected. It was founded by 5 parents in 2010 who wanted to fund research into the condition after Rett was reversed in the lab in 2007. Gene therapy clinical trials are now taking place worldwide, trials that we helped to fund, including the UK, which we hope will make our original goal a reality.
2. We’ve worked together a number of times, but I want to go back to before we met. You set up the charity in 2009 when social media wasn’t the huge beast it is now. What has been the biggest change between 2009 and 2025 in how you communicate? And why did you 1st join social media?
It’s like a different world now. Social media was still fairly new and, in the beginning, we contacted other parents on mumsnet and similar platforms. It was really finding one family at a time and hoping they would engage with our vision. We launched in 2010 and had a successful London Gala just a few months later with the help of a very small number of families. At the time we had one person doing everything without getting paid. One we had our Facebook page set up we slowly grew the charity helped by winning ‘Best New Charity’ at the Charity Times and Just Giving Awards.
3. We met in February 2020 just before the pandemic. How did you hear about us and what was your big social media problem at the time?
I found your website on Google. I was looking for someone locally to help with our newly created Instagram page and after reading about your work I thought it would be a good move to include Facebook too. Facebook is where our families and supporters tend to gather and although it was doing ok there was definite room for improvement. Our biggest issue is still the same today as it was then, we have a small team with everyone wearing different hats as and when needed. There are so many social media channels out there that it’s hard to keep them all fresh and interesting. If you throw the changing algorithms into the mix then it soon became clear on us meeting that we needed your help.
4. So to recap you were on Facebook and Instagram. The main goal from the session is to increase our organic reach. We have seen a drastic drop when not paying for posts over the past few years. The main objective is to gain a better understanding of what works best on both platforms. What were your biggest takeaways from that 1st session?
There were plenty. The main ones were using engaging images and trying to make each post personal. You showed me examples of different charity pages who used different approaches, I’d never had the time to do that. The one that resonated the most was ‘Humans of New York’ which told a story on each post, their reach was incredible and the number one thing I took away from that first session was getting quotes from parents and supporters and share why they were so committed to helping Reverse Rett and who inspired them to do it.
5. 2 months after we met the country went into lockdown. How did you as a charity deal with the changes and struggles this brought with fundraising?
It was a real struggle. We rely on fundraising and basically no one was able to do any. We had a couple of successful Just Giving campaigns which helped keep us afloat and we had a small reserve that allowed us to keep funding the CIPP Rett Centre in London who were still seeing patients remotely. There wasn’t much for us to share so we began celebrating children’s birthdays on our pages. Most of the staff were furloughed so we survived unlike many other small charities.
6. You’re a small charity and a niche charity. What obstacles does that bring when marketing as a small team against much more well known charities?
Most people have a personal cause or charity they support. It’s usually something that has touched them personally. Rett syndrome is classed as a rare disease of which there are thousands. Unless you have a child, family member or friend/connection who have been affected by it then it’s not something you are likely to fundraise for. We have to try to attract families first to our mission and hope that they will get others involved. We have faced criticism in the past that families have enough to deal with already and we can’t expect them to fundraise too. I get that, I’m a parent to two adults with Rett syndrome myself so I know how challenging day to day life is but if we don’t push for treatments and a cure who will?
7. What would you say has been your biggest success as a charity from social media?
Social media has been the bedrock of our fundraising, especially Facebook. It’s hard to pick out one but our continued success in the Big Give Christmas Challenge where we have exceeded our target for 15 years in a row, raising over £1.5M through that challenge alone.
8. You’ve come back to us time and time again – once again in 2021 and then in 2025. How helpful is it having a marketing expert giving an outside pair of eyes who isn’t in the Rett world or charity world specifically
I know that Meta are constantly changing algorithms and trying to force businesses and charities into paying for adverts to get high levels of engagement. Hearing your take on it every few years is vital. It also helps having an outside perspective, we are parents and have been doing this for a long time so a different perspective is really important to help us improve and grow.
———————–
I want to talk about a few of the areas was covered in our last session
9. One of the key areas was increasing your presence on LinkedIn. You’ve gone from invisible to highly visible. How important is LinkedIn for you and what have you achieved since we met?
It’s always the same problem, not enough hours in the day. LinkedIn is a very different beast and the posts need to be different from FB and Insta as it’s a different demographic. We have increased our presence recently but it’s very much a work in progress.
10. Education content was one area that was missing in the content mix when we looked at your socials. Again it taps into that outside pair of eyes that a marketing expert brings. How has the educational content worked since we met?
It’s been fantastic. We have a new Trusts and Foundations Manager, Sarah, who highlighted this problem. She does not have a child or family member with Rett and pointed out that when she was doing research into the condition before her interview she couldn’t see anything about what it actually is. She is now writing posts about different areas of Rett and they are being well received and widely shared.
11. I saw one of the 1st posts you did on Facebook got over 150 likes and 300 shares. Education content we just mentioned. Did that post reach a whole new audience?
Yes definitely. It was shared by families as always but also their friends, so it reached new people who hadn’t heard of it before.
12. Getting Personal on Social Media. I know you did a little of this. But how do you balance being personal on social media with having a private life?
I don’t have much of one. The two are so intertwined. I have a few personal rules like never post when on holiday or family stuff when I’m actually doing whatever it is I’m doing. I am so passionate about the charity and helping parents navigate this journey we’re all on that I get more stressed if I aren’t visible on social media. It’s also a form of therapy, taking on challenges and being honest about why is often about me getting my thoughts out of my head which seems to clear it. I also want other parents to know they are not alone which is what I thought for the first 10 years of my daughter’s life. It is a privilege to do this job and I’ll be here until either I’m gone or Rett is.
13 What was the one idea you introduced to social media that you’d have never thought of if you hadn’t sat with us?
That is a hard question as there are so, so many. The one thing I always remember though is to make every post as personal as possible to make it count. It’s impossible to know what this Rett life is like unless you live it every day and sharing family perspectives alongside photos of their beautiful children, has really helped to get more people involved.
14. And lastly. If there are any businesses or charities reading this article and are considering social media training. Can you sum up in one paragraph how it has helped Reverse Rett and why you would recommend it to others?
Whatever you do, you can always do it better. Get a different perspective and see your business thrive as we have. Taking the leap to go and see Alex was one of the best professional decisions of my life.
To find out more about Reverse Rett take a look at https://www.reverserett.org.uk/
NEED HELP WITH SOCIAL MEDIA FOR CHARITY OR BUSINESS
Looking for authentic ways to grow your social media
Chat to us about Social Media Marketing for YOUR organisation , so we can better understand YOU and what will grow your organisation
We can only find out what is unique to your business by chatting with you
Look at our Social Media Training and Social Media Management services
We offer Social Media Training on
* LinkedIn
* Instagram
* Facebook
* Twitter
* TikTok
* Blogging
We can do this
* 121
* Corporate Workshops
* Group Workshops
* Face to Face or Via Zoom
Please call Alex on 07806774279 or email alex@altrinchamhq.co.uk
