Laura's role at the MND Association

Hi runners! My name is Laura and I help children, young people, and their families feel understood, cared for, and supported when a loved one is diagnosed with MND. Parents with MND have always told us that one of their biggest worries is the impact of their diagnosis on their family. MND is complex and can progress rapidly, and the trauma felt by children and young people can be devastating.

I joined the MND Association in 2017 to address the unmet needs of young people who need support and I am so proud to have worked with so many of them to help shape our services. Fundraising in honour of Rob Burrow-by people like you has had a direct impact on the services we are able to provide for young people. After raising an astonishing £2 million for the MND Association in 2020, Kevin Sinfield chose to channel a portion of that money into growing our support for young people and families. Memory and treasure boxes Memories are incredibly important for young people who are impacted by MND. That’s why we’ve created dedicated boxes for children and young people, filled with activities to help them capture special memories and treasured facts, stories, and information about their loved one to keep safe. Memory-making days we also offer families the opportunity to make those precious memories together. This month, we’re holding our latest memory-making day for families affected by MND. It’s taking place at Bendrigg Trust in the Lake District, which will enable people with MND to join in outdoor activities with their children. Memory and treasure boxes will be made available, free of charge, to all children and young people, which they can begin to fill with pictures and keepsakes from the day. 

You might have also read previously that David’s family benefitted from our free story books, which are an incredible way of explaining some of the things that happen with MND to a young audience. Tailored counseling thanks to our partnership with Barnardo's, we’re also able to offer young people affected by MND fast access to tailored counseling. This was introduced in 2019 after we found children were waiting months for an appointment through traditional channels, which simply wasn’t good enough. Now, children and young people can access MND-specific counseling at any stage of their loved one’s journey–from diagnosis to post-bereavement. Barnardo’s therapists can also support and empower parents with tools, knowledge, and access to resources to help younger children who may find it difficult to engage in virtual sessions. Thank you all so much for running the Rob Burrow Leeds Marathon. Your support, and the generosity of your donors, are truly making a difference to young people affected by MND, like Macy, Maya, and Jackson Burrow.

Good luck with the rest of your training!

Lauracyp@mndassociation.org