Hi, my name is Charlotte, I'm 25 years old and from the North East of England.

On the 27th January I will be travelling to Tanzania, to climb Mount Kilimanjaro with a group others from all over the world, to raise awareness for rare diseases. Huntington's Disease is a rare disease close to my heart.

I will be raising money for:

• Huntington's Disease Association https://www.hda.org.uk/

The charity champions the needs of the Huntington’s community and through a multifaceted approach helps to educate families, friends, and healthcare professionals about HD. These efforts are accompanied by seeking to influence decision makers and keeping the wider Huntington’s community well informed about key developments. The HDA did specialist training in my nanas nursing home to ensure she was safe and appropriately looked after, they've provided support for care for my family members as carers and my mum with the disease. I will also be taking part in a new project with the HDA, called HD Youth Voice, which will look at how we improve the support for young people impacted by HD in the UK specifically.

• HDYO - https://en.hdyo.org/

The Huntington's Disease Youth Organisation is an international non-profit supporting, educating, and empowering young people up to 35 years, impacted by Huntington's Disease (HD). I am a charity youth ambassador for HDYO and they've changed my life for the better. Before finding HDYO, I had never met another young person impacted by HD and this was really difficult and isolating. I'm now part of an incredible community of young people from all over the people, meeting online regularly and empowering one another as advocates for change. in HD awareness, research and pharmaceuticals. In March 2023, HDYO will hold a global in person conference and I will meet a lot of the wonderful now friends I have made through the charity.

I will be splitting the fundraising 50/50, therefore using GoFundMe as a platform, posting evidence of the charities receipt of the money once collected.

Huntington's Disease

HD is a rare, genetic neurodegenerative disease that occurs due to a faulty gene on chromosome 4 which slowly kills neurons in multiple areas of the brain. HD affects the body’s nervous system, the network of nerve tissues in the brain and spinal cord that coordinate your body’s activities. It’s an incurable, terminal illness and anyone with the faulty gene has a 50/50 chance of passing the gene onto their children, it’s often compared to tossing a coin.

The disease has been described by doctors globally as ‘the cruellest and most devastating disease’ they come across with combined symptoms of Parkinson’s, Motor Neurons Disease, Dementia, ALS, Schizophrenia, Depression, and Anxiety. It completely takes over the human body and slowly shuts down things you use for everyday functioning. Symptoms usually affect three main areas: movement, cognitive functions, and behaviour.

There are around 8,000 people with the disease in the UK and 2 of those 8000 are the two most important women in my life, my beautiful mum and Nan. My great nana passed the gene to my nan and my nan to my mum. We sadly lost my incredible Nana to HD in December 2021. My amazing sister and I have a 50/50 chance of carrying the gene and developing the fatal disease in our adult life. Our focus is on mum and we live in hope that’s not the case and have learned not to fear that outcome after all nobody knows what tomorrow brings.

The early stages of the disease symptoms include uncontrollable muscular movements; stumbling and clumsiness; chronic pain; lack of concentration and short-term memory lapses; depression and changes of mood and personality. Symptoms of the middle stage of the illness often revolve around changes in muscles and movement, although changes in behaviour may also become more significant and challenging too. My amazing mum is at this stage of the condition but her strength and courage is astounding, anybody who knows her will understand what I mean by that. She is never anything but positive and optimistic despite everything she goes through, there are no words for how proud we all are of her. In the final stages, patients experience difficulties with weight loss and nutrition, speech and swallowing, movement and stiffness, and communication. My nan was in this stage of the condition for 8+ years, she was fed through a peg, couldn't walk or talk but being her carer meant we developed our own language and I often knew what she needed. I worked part-time in her care home during the pandemic, to ensure she wasn't without visitors throughout lockdowns, despite working my usual 9-5. This was an incredible experience that brought me a lot too.

As much as HD has an 'average' age of onset, anybody who is gene positive can start to show symptoms at any point in their life, even as a child. It's tough not to think 'when' that may be if I do have HD so it's important to me to fit everything I can into my life.

I've always wanted to climb Mount Kilimanjaro and those who know me will know I'm always asking 'what adventure next'. To be able to do something positive for others impacted by this awful disease brings me a sense of comfort and peace that can't be matched. It will take 7 days to complete the expedition.

Everybody in the group I am hiking with, will be hiking to raise awareness of 'The Year of the Zebra'. The project, ran by the company my dad is employed by hopes to educate patients, family members, healthcare professionals, researchers, students, and the general public about the 7,000+ zebras that collectively affect 300 million people around the world. I have inserted a video about the campaign and it's mission. It aligned so well with my values, that despite the short time frame between me posting my page and the adventure itself, I could not turn it down. I'm grateful for organisations like Osmosis https://www.osmosis.org/ for going out into the rare disease community to understand the challenges of patients.

I appreciate times are tough for everybody at the moment and raising money isn't my main aim, I hope to raise more awareness and inspire others to do the same. Together we can change the healthcare system and improve the lives of those with rare diseases.

Thank you so much for taking the time to read and support!