The Arcs Platform

Alice’s Arc welcomes four new Arcs to its unique network created for rhabdomyosarcoma families

 

We now have 10 Arcs across the UK, from Northern Ireland, the North, the Midlands, London and the South of England.

We are thrilled to introduce 4 further Arcs to our platform of families. We now have 10 Arcs across the UK, from Northern Ireland, the North of England, the Midlands, London and the South of England. It is a pleasure to work with all these families. It is a relentless passion, deep love for our children and recognition of the power of collaborating that brings us together to fight for change for children diagnosed with rhabdomyosarcoma in the future.

*Beanie’s Arc for Beanie who died aged 2 in April 2020, note his beautiful rocket with his family in it.

*Esther’s Arc for Esther who passed aged 4 in March 2016, note her squirrel icon which represented a big teddy squirrel that accompanied Esther through treatment.

*Ethan’s Arc for Ethan who died in August this year, aged 9. His community adopted EA10 for Ethan and it is taking on a life of it’s own being used at Ethan’s football club and beyond.

*Will’s Arc for William Rutt, who died in February 2021, aged 20. Will drew this bear himself and his family wanted to give his Arc a more adult feel using black and brown and birds in his Arc.

WHAT IS AN ARC? By way of reminder, an Arc is a place where a family and their supporters/community can honour their child’s experience with rhabdomyosarcoma, fundraise, advocate and demonstrate their impact. Collectively the Arcs allows families to come together – funds can be pooled towards the most relevant/impactful research and voices can come together to powerfully convey our message.

WHY ARE WE CREATING THE ARCS? We want to pool families and resources together in a central, long-term and sustainable rhabdomyosarcoma hub. By working together we are stronger.

– We can ensure that research is parent-led and addresses the needs of families diagnosed in the future.

– Research is complex and expensive – pooling funds together allows Scientists to formulate more comprehensive research proposals with clinical translation.

– We can support families. Our community of rhabdomyosarcoma families including parents, patients and siblings can offer support and understanding to newly diagnosed families, those on treatment, those in remission, those on palliative care, survivors and those suffering the loss of their child.

News

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