Meet the stars of this year's BBC Lifeline appeal.
Charlotte is a passionate Huntington's disease advocate, a carer for her mum who is in the middle stages of the condition and she cared for her nan who sadly passed away from Huntington's disease in 2021.
Charlotte recently found out that she is also gene-positive.
In no way has processing the news been easy, some days it feels like the heaviest weight in the world and a confusing load to carry at that. BUT, my life continued and for that I am so grateful. It’s opened my eyes to the fragility in all of our lives, Huntington's disease or not.
Charlotte's fundraising
In an attempt to take back control, Charlotte challenges herself with different fundraisers, climbing Mount Kilimanjaro for the Huntington's Disease Association in 2023 along with walks and runs to raise funds.
She is also up for 'Fundraiser of the Year' awards at the annual Huntington's Disease Association awards. The nomination is for her 'Box Step Everest Challenge'. During the event, which took place on Charlotte’s birthday, Charlotte and her supporters climbed the equivalent of Everest on 20-inch box steps. Charlotte and CrossFit Teesside ensured the challenge was accessible to all, with multiple steps put in place for those who needed it. Charlotte’s mum, Elaine climbed the last five steps with the help of Charlotte.
Support for young people
Over the years, Charlotte has been supported by the charity’s Youth Engagement Service - HDYES. Something her mum, Elaine is really grateful for.
The biggest thing for mum is knowing me and Hannah aren’t alone anymore and we don’t have to go through things alone.
She is also on a panel of young people called HD Youth Voice who are involved in collaborative projects with the charity. The group encourages them to be involved in shaping how the charity supports young people. A recent project undertaken by HD Youth Voice was a co-produced video that aimed to show other young people from Huntington's family that they are not alone.
The community has saved my life, helping me navigate this horrific condition, there’s no other way to put it. We’re here to reassure you, that same community is here for you too.
Charlotte plays an active role in the Huntington's community and is also an ambassador for the Huntington's Disease Association. Being part of this group means that Charlotte works closely with the charity on campaigns such as awareness month, blogs for the website or press to raise awareness of the disease. A highlight for Charlotte was the opportunity to share her story at our 2023 Huntington's Disease Community Conference and Annual General Meeting (AGM).
Supporting Charlotte's mum
Elaine, Charlotte’s mum has accessed the charity’s services for a number of years. Elaine receives support from a Huntington’s Disease Adviser who helps her find other services including local support groups. The charity also supported her when her mum, Lin (Charlotte’s grandmother) was moved to a care home and the staff were trained in the best way to care for Lin.
BBC Lifeline Appeal
The BBC Lifeline appeal will air on Sunday 28 April at 12.50pm.
