Kate’s Story

By 01/04/2015Stories

My name is Kate. I’m married to Frank and we’ve been together for 25 years.

Completing our family we have two very chatty, active girls, Isabella and Sofia, who keep us on our toes. Frank, along with his two older brothers, suffers with Kennedy’s Disease. We have also been advised that both our daughters are potential carriers of the disease, meaning that they could pass it to their children. However, despite our best efforts, we are still waiting for appointments to have them tested and have yet to get their details onto the UK Kennedy’s Disease database.

As a family, we have always felt as though we’ve been banging our heads against a brick wall with regard to finding out more information about KD – in fact most people, and many medical practitioners, haven’t even heard of it. It can make you feel very isolated and uncertain about the future.
Thirteen years ago, when we finally found out the name of the awful disease affecting Frank and his brothers, there was practically nothing on the Internet. Thankfully, over the years, some information has become available online and there are now websites where sufferers and their families can begin to reach out to others to share information and experiences. But this is still very much in its early stages and it is now our goal as a family to help drive that process in the UK.

‘Challenges are what make life interesting and overcoming them is what makes life meaningful.’ – Joshua J. Marine

We have a wonderful group of friends from Chamonix to thank for helping us kick start our mission. They raise money every year, through an annual challenge, for charities that are close to their hearts. In 2012, they asked us if they could raise money on behalf of Kennedy’s Disease. We were blown away by their kindness in seeking to help raise awareness about KD. When we started to think about the practicalities of administering that funding, however, it dawned on us that there was no official KD charity in the UK – no organisation, not even a database with names of sufferers and carriers. Undeterred, our amazing friends took on a massive challenge – completing an epic bike ride across the Route Des Grand Alpes. It was just the springboard that was required to help kick start KD-UK into life.

This disease affects my husband, his brothers and our children. I’m proud that we have been able to start up the first and only UK-based Kennedy’s Disease charity, but we need help to spread the word about this disease. To make KD-UK effective we need to continue to raise funds and awareness. It’s my mission to generate awareness of the disease and to meet someone that says, “Kennedy’s Disease, yes I’ve heard of that.” It’s also my mission to raise funds to further the important and groundbreaking research that’s taking place at University College London (UCL). Together we will find a cure for this disease. Thank you for visiting our web site and for taking the time to learn more about us. If you would like any further information about Kennedy’s Disease, or KD-UK please contact us.