Chair: Elin Davies
Meeting Secretary: Ashleigh Kennedy 

What was discussed? 

Hannah discussed her response to fundraising ideas that were suggested in the prior meeting: 

  • In the last 7 months, it was determined that virtual walks and Emily’s “Wicked Walks” have done well. 
  • £85,000 was raised through community events, birthday fundraisers on Facebook have done particularly well. 
  • A total of £8,600 was raised from a variety of marathons, including 3 people who ran in the London Marathon. 

Plans for 2022: 

  • Tough Mudder. Members of the Youth Board have expressed an interest in taking part in a Tough mudder event. Hannah has looked into this and has some options, we would need a minimum of 10 people to take part. People can let Hannah know if they want to join by emailing her at:  [email protected]
  • Abseiling the UK’s tallest sculpture: Less intense than Tough Mudder, we need more than 10 people to join as it would give a 5% discount to the overall price. Let Hannah know if you would be interested in taking part in this. 
  • Potential Christmas Party - A murder mystery game: There was discussion on whether this would be online or in person, some members were vocal about it being in person but it was the general consensus that online was a better choice due to people who may be shielding still or who have concerns about COVID-19. The AAT will look into organising this. 

The Aplastic Anaemia Trust's approach to raising awareness:

Ellie has been looking at how to raise awareness about the AA Trust and AA itself. This is a high priority for our community - and this is reflected in rare diseases more widely too, 19% of people with a rare disease said that more awareness for their condition was a main challenge faced by rare disease patients.

Ellie discussed how getting information to everyone in the country - or even every GP - was beyond the capacity of the charity, and not the most effective way to address the challenges faced by patients. Instead, partnerships with bigger charities and help centres are vital. Maggie’s is one such organisation, who have recently partnered with the AA Trust. 

Furthermore, The AAT are supporting Anthony Nolan by providing their teams with accurate information about AA,  which is good because Anthony Nolan have a large PR presence over the UK. The AAt can ensure that when Anthony Nolan secure big stories that feature aplastic anaemia, the condition is presented accurately. 

Beyond that, the AA Trust is working to fundraise money to help create accredited training courses for CNS nurses and professionals, which will help them understand Aplastic Anaemia more and help with patient care in the future. It was often expressed by members of the board that having trained specialists would greatly help with their care and treatment plans. 

Generally, we also look to help patients advocate for themselves as well. One of the aims of the charity is to make sure people who have Aplastic Anaemia find us as soon as possible. This is so we can provide them with information that they can share with people in their lives such as family, bosses, schools etc. We’re also looking to support people who want to share their story, like Daniel did with his vlogs and videos about answering questions. 

What would you like to see?

This time, Ben was asked for his opinion on what he’d like to see for Aplastic Anaemia patients. He suggested that there be more resources for those who have finished their treatments and who might need help getting back to normal. He focused mostly on fitness and suggested that the charity build an accessible database of fitness trainers and centres who specialise in working with people who have serious diseases similar to Aplastic Anaemia. This could also be extended to mental health help, finding professionals and other charities which specialise in helping those recover mentally after a serious illness. 

Stevie Tyler and the team at the AAT were very interested in Ben's presentation and indicated that this is a project we could be seeking to progress in the new year. Ben's involvement could help to tailor this programme and provide evidence of patient need which would help us to secure funding. 

Next Meeting Details

- Date: 4 November 2021

- Time: 18:30

- Chair: Henry Young

- Secretary: Ella Bearpark

This meeting report has been prepared by Elin Davies (Chair) and Ashleigh Kennedy (Secretary)