The Aplastic Anaemia Trust are very excited to have formed our Youth Board, and last week was our first meeting! We will publish a short report of each Youth Board meeting, prepared by the Chair that month. The format of this report is up to the chair, it could be a written summary like this, a list or a video! This first meeting report has been written by Ellie, Comms Manager.

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Youth Board Meeting on 12 August 2021

Chair: Stevie Tyler 
Meeting secretary:  Leena O’Hara  

Who attended the meeting?

We were really pleased that our first Youth Board Meeting could be attended by all members of the board. Attendees were:

AAT staff: Stevie Tyler (CEO), Leena O’Hara (Programme Manager), Ellie Dawes (Communications and Fundraising Manager).  

Board Members: Ella Bearpark, Harry Branthwaite, Sophie Byrom, Elin Davies, Ashleigh Kennedy, Lily Pope, Alexander Reid, Benjamin Stephenson, Callum Tempest, Henry Andrew Hamilton Young.

What was discussed?

What the Youth Board is, and why we're here. 
Stevie highlighted the importance of the board, particularly as half of people diagnosed with aplastic anaemia are under the age of 25. The AAT Youth Board is a new and exciting component of the AAT and will ensure that there is greater representation of those most affected by aplastic anaemia. This will ensure that the AAT is keeping the voices of young people at the very centre of the work they do. Members shared some of their experiences and why they are excited to be part of a group and connect with others.

Future projects
The Youth Board has some budget to spend over the next few months on activities that engage young people with The AAT's work and support them. Ellie proposed a comms project which will support young people in telling their stories through video (creating a series of films about what life is like for young people affected by aplastic anaemia). The Youth Board were enthusiastic about the project, and highlighted the potential for video content to:

• Raise awareness and highlight key messages such as the difference between aplastic anaemia and cancer.  
• Provide hope and comfort by seeing and hearing from other people who have gone through a similar experience to themselves  
• Reduce the burden on themselves to keep explaining the condition to friends and families  
• Make an impact by evoking an emotional response to get people to stop and think. 
• Provide bitesize, visual information, which would benefit people who struggle with reading  

Ellie will move further on this project, opening an application process and presenting a budget and clear plan at the next meeting. 

The Youth Board will be able to suggest other projects and activities at future meetings, by contacting this month's chair to add them to the agenda. 

AAT asks

This section of the meeting exists for staff at The Aplastic Anaemia Trust to ask for support from the Youth Board. This month there were two requests:

1. AAT Skydive Ellie explained that the AAT are exploring more engaging community fundraising ideas, which would have a broader appeal. Historically, community fundraising has included walks, picnics and tea parties. The members were made aware of The AAT Skydive taking place in the North of the country on 26th September. Places are still available or if anyone would like to explore organising a sky dive in their area, there is a minimum of 6 people required to make this viable, with a maximum number of 12. If there are any members, or friends and family members of the board members, who would like to do this as a fundraiser, please contact Hannah [email protected] for more information.  

2. Feedback on our new MarrowKidz information. Leena provided an overview of the eight new MarrowKidz resources launched today. This includes three new guides for siblings, two guides for staff working in educational settings and a guide for parents of a very young child diagnosed with aplastic anaemia. Alongside the guides, the AAT have also launched an animation on treatment options for children, around the age of 10, and a new picture book for very young children. All the resources have been produced with children, young people and young adults. There is a short survey to capture feedback on the new resources. Leena asked board members to help us demonstrate the difference we are making by providing their feedback on the resources.  

Governance 

The AAT Youth Board formally approved our Terms of Reference, with a couple of useful additions and clarifications.

We also set a date for our next meeting, and appointed a chair (Lily Pope) and a Meeting Secretary (Callum Tempest) for the next meeting. You can expect a repot from them on this meeting in a month's time!

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The Youth Board is here to represent you! If you have a message you would like to share with the board, email Ellie at [email protected] and she will pass it on to the board. 

With thanks to The National Lottery Community Fund, who are supporting this work.