It’s all change at The AAT as we bid a sad goodbye to Stevie Tyler as our CEO, and hello to incoming CEO, Joe Kirwin. We catch them in conversation about how The AAT has grown under Stevie’s leadership, and where we might go next, with Joe in charge.

Stevie: Welcome Joe! So what makes you excited about leading The AAT?  

Joe: Far too many of those living with rare conditions are forgotten about or ignored. Yet the AAT have made sure that those living with aplastic anaemia get the support and advice they need. The AAT is a small but mighty charity that punches well above our weight and I’m so excited to be joining a team that put the needs of patients and their families at the heart of everything we do.  

How was The AAT different when you started as CEO in 2020? 

Stevie: It was a lot smaller! I was the only full time permanent employee, working with Leena who was here on a fixed term contract to create our MarrowKidz resources for children, young people and families. 

It was also deep in the pandemic, so we had no events and I couldn’t meet anyone face to face. I got to know the community online only for nearly two years! 

My predecessor Grazina was brilliant, and I had a detailed handover from her. But then suddenly the pandemic and lockdown hit and so much was up in the air.  I had a mad first year, pivoting so much of our support to be online, and supporting people through what was really a terrifying time for people living with AA. Immunocompromised people had no idea if they’d ever be able to go out and see people again. People couldn’t visit family members in hospital. Noone knew if the vaccine would be effective for people with AA. There was a lot to do and all of it was urgent! We (and I) had to learn fast. I’m really proud of the work we did during that time, including funding the research that told us the Covid vaccines were safe and generated an immune response in people with AA and PNH after the second dose.  

Joe: What other things are you proud to have achieved as CEO? 

Stevie: I am really proud of how our community reference groups have developed, especially our youth board. It is so important to have community voices at the heart of our decision making. This shapes how we talk about aplastic anaemia, challenging our thinking and ensuring that we’re covering those important topics like symptom management, relationships, travel insurance and bereavement.  

The Super Rare campaign also means a lot to me. It was created during the first few months that Ellie worked here, and she created a beautiful and engaging way to raise funds and feel part of something big during a time when we were all still stuck at home. When the Better Together for Healthy Marrow Alliance received its funding, we extended Super Rare to include the six other charities and enable them to raise funds and celebrate their community. It makes me so proud that in 2025 it raised over £45k.  

Of course, as a charity representing a very rare conditions, we’re not necessarily aiming to grow bigger and bigger forever! But there are other ways for us to do more. 

Joe: That’s why the partnerships you have built with other charities are so important, to help us punch above our weight – and having team members all over the country helps us reach more people too.  

Stevie: Yes, it can be a challenge to manage everyone remotely with no central office – but that’s a massive advantage. There’s no way we’d be able to have the coverage we have across the UK if we had an office, and I’m proud of the culture and sense of team we have built together.  And we get together twice a year.  

Joe: Yes it was great to come and meet everyone in York in February to meet everyone and join in with the planning.  

The Aplastic Anaemia Trust team plan our Christmas appeal together in February.

Stevie: It’s a great time to take over as we’re coming to the end of our five year strategy, and it’ll be time for a new one! 

Joe: Yes! This is a huge opportunity to look back at all the AAT and the team has achieved in the past five years and plan for the next five years so we can have an even greater impact. A commitment to investing and growing the amount of research into aplastic anaemia will be key pillar of this work. Indeed it has already begun and our research priorities paper will be published later this year.  

On a more personal level, I’m very excited about getting to know the team better and meeting with our whole community to understand their needs. What will be key to building the new AAT strategy and delivering projects will be putting the needs of people with aplastic anaemia at the heart of everything we do.  

Stevie: You come from being CEO of Pancreatic Cancer Action, a rare form of cancer, so you understand many of the challenges faced by our community. What do you see as the big challenges that The AAT, and people living with aplastic anaemia, might face over the next few years? 

Joe:  People living with a very rare and serious condition end up with a load of extra work to do for themselves, or their loved one. They essentially have to become experts in the condition, to advocate for themselves and to make decisions about treatment, when there is less information available. This exacerbates health inequalities in this group of patients, between those who have the skills, the opportunity and the means to do that extra work and advocacy, for whatever reasons, and those who don’t.  

As genetic testing becomes cheaper, and more research is conducted, there are going to be more people diagnosed with rare conditions, so rare disease needs to be taken seriously, and there needs to be more awareness of, and support for, those additional challenges.  

And of course, this is a big time of change in the UK’s health system. At the moment, no-one is quite sure what the abolition of NHS England will mean. It’s up to charities like ours to work together and make sure rare disease patients are properly considered when changes like this are implemented. 

Stevie: Lots of challenges, but also opportunities! The team are really excited about having someone with your campaigning experience on board. Do you have any thoughts on what The AAT should be campaigning on? 

Joe: There is so much potential to make a real positive impact through the campaigns we can run. We have seen the recent success of ensuring that aplastic anaemia information and support was added to NHS inform in Scotland. But we have a long way to go to ensure there is real recognition of the challenges our community face. This includes campaigning for investment in new treatment options, calls for improving pathways, fighting for an end to postcode lottery for treatment and lobbying for long-term post-transplant support.  

However, at the end of the day it will be patients and their families in partnership with clinicians who will be setting our campaign priorities and I look forward to hearing from everyone on what matters most to them.  

Stevie: I can’t wait to follow these campaigns from afar and feel really proud of everyone.  

Joe: I hope to see you liking all our posts on Linked In! 

---

Would you like to send a welcome message to Joe, or ask him any questions? You can email him at [email protected].

Got a goodbye message for us to pass on to Stevie? 
Send it over to Ellie, at [email protected] and we can pass it on.