​🏃‍♂️ Running the Leicester Half Marathon for Maisey & CamRARE

​Thank you so much for visiting my page!

​This October, I am running the Leicester Half Marathon. I only started running in January this year, and I definitely don't find it easy! Every km is a physical and mental battle, but I am pushing through it for two incredibly important reasons: my wonderful niece Maisey, and an amazing charity called CamRARE.

​Why I'm Running: For My Niece, Maisey. 🩷

​Maisey is an amazing, bright, beautiful, and determined 9 year old that lives with a rare genetic condition called MC4R.

​Our bodies use genes to tell our brains when we are hungry and when we are full. Because of a tiny glitch in the MC4R gene, Maisey's brain struggles to receive the signal that says "I’m full." This means she has to live with an intense, constant, and overwhelming sense of hunger every single day. It is an incredibly difficult condition to manage, and it impacts day-to-day family life in ways most people couldn't imagine.

​Knowing how hard Maisey fights every single day is my ultimate inspiration when the training gets tough. If she can handle her challenges like an absolute superstar, I can get myself across that finish line.

​Why I’m Supporting CamRARE

​When a child is diagnosed with a rare condition like MC4R, families can feel incredibly isolated. Often, the support services families desperately need simply aren't within reach yet.

​CamRARE runs the Rare Disease Research Network, which connects families directly with the scientists, researchers, and pharmaceutical experts who are looking for the very data that will lead to better treatments for conditions like MC4R.

​They are experts at:

​Bridging the Research Gap: By helping families share their data safely, they ensure scientists have the information they need to understand conditions like Maisey's.

​Bringing Voices Together: They demand and create change by bringing together patient communities to challenge the status quo.

​It’s estimated that one in 17 people will develop a rare condition at some point in their life – that’s around 3.5 million in the UK alone, and over 350 million worldwide. If we were to consider their close families, we could estimate that a rare condition will impact one in five of us. Individually the unmet needs of those with a rare condition are often seen in isolation.

​CamRARE brings their voices together to create a powerful chorus to demand and create change. They strive for a world where people with rare diseases are valued and supported.

​How Your Donation Helps

​Every penny raised from my half marathon will go directly to CamRARE so they can keep building the infrastructure needed to ensure that one day, no family dealing with a rare disease has to feel like they are searching for support in isolation.

​If you can spare a few pounds to sponsor me it would mean the absolute world.

​Thank you so much for your support!