A few years ago as a family our life fell apart when my daughter Charlotte-Ann developed cancer and later was diagnosed with an incredibly rare genetic disorder called Cowden Syndrome. This disorder means she is at risk of growing tumours both benign and cancerous just about anywhere in her body, it is a terrifying and often debilitating condition with sufferers facing countless surgeries throughout their life time.
This will be my second year of fundraising in aid of PTEN research in the hope of helping towards finding a cure or treatment not only for my daughter but anyone with a genetic cancer causing disorder. This year will be a giving up rather a doing, I will spend 12 months without refined sugar or related products or a single alcoholic drink,
My first year of fundraising ran from March the 8th 2018 (the second anniversary of her thyroid removal) to March the 8th 2019. My personal challenge was 260 CrossFit type workouts (anything that has appeared on the CrossFit games counts from running, swimming to lifting heavy stuff) across the year for which I asked for sponsorship, I also be sold T-shirts and plan on doing so again this year. This challenge ended succesfully. The full details of every single workout and all money raised can be found here https://www.facebook.com/cure4cowdens/
Rare diseases are massively underfunded and misunderstood. The impact on those who have it or their families is no lessened because they are a smaller in number, in fact in many ways it;s worse. There are no celebrity figure heads, no local support groups, even trying to talk about it involves a lengthy explanation as to what it even is which increases isolation. Help me bring a little hope