In November 2020 Titus announced a fundraising partnership with KD-UK, to run for at least the next two years, encompassing fundraising, sponsorship of events, and promotional activities to widen awareness about the vital work KD-UK undertakes.

We’ve set up this page to gather money from our own fundraising efforts and also to provide a channel for our partners and clients to make their own donations, should they wish to join us in supporting KD-UK.

It’s a cause which is particularly close to our hearts as a team, as one of our colleagues Luke is a sufferer of the disease. You can read his story below, which will hopefully give you a little more insight into how Kennedy’s Disease affects people on an individual level.

Luke’s story

So…let’s start with the science. Kennedy's disease is a pretty rare inherited disease which is an adult-onset, progressive disorder. It is characterised by the degeneration of lower motor neurons within the spinal cord and brainstem (pretty scary stuff!). It causes progressive weakening and wasting of the muscles, particularly in the arms and legs. For someone that LOVES squatting in the gym, the thought of weak legs terrifies me! 

Since the disease is recessive, the presence of the normal gene on the other X chromosome means that girls generally don’t develop symptoms but will be carriers, and each son of a carrier mother has a 50% chance of inheriting the gene and developing the disease.

It is estimated that 1 in 40,000 people have this genetic defect and because it is relatively rare, Kennedy’s Disease is often initially misdiagnosed or goes undiagnosed for years. There is no cure for Kennedy’s disease and no current treatment available. 

Before I was diagnosed in August 2016, I wasn’t really aware of just how bad it could be. I’ve had shaky hands as long as I can remember and often suffered from cramps. As I began the process of getting diagnosed, and I read more about sufferers and their stories, I was shocked about what might happen in future. Common symptoms can include swallowing difficulties, speech difficulties and muscle wastage. I remember this line from the KD-UK website hit me pretty hard:

“What starts with small trips and falls, can eventually lead to wheelchair confinement and full-time care.”

To be completely honest, day-to-day I’m absolutely fine physically. I shake every day (they get worse when I’m nursing a hangover!), I cramp most days and I get tired pretty easily. Beyond that, Kennedy’s doesn’t really affect me, at least right now. 

Mentally, it’s a different story. My biggest fear is having to depend on people in order to live, and there’s a very real possibility that may happen to me in the not too distant future.

Having said that, being diagnosed has allowed me to gain some perspective relatively early on in my life. It’s allowed me to appreciate life more, work in a job I love, travel, spend time with family and friends and to be quite honest, life is more fulfilled now than it’s ever been. There’s a chance life won’t always be great, so I’m determined to make the most of it while I can! 

The other thing is, it’s not all about me now! My two girls will definitely be carriers, and if they ever have boys of their own, there’s a 50% chance they will get the disease. My two nephews have a 25% chance of having the disease. 

I’m determined to make sure the little ones don’t have to live with Kennedy’s when they are my age, and this is a big part of what drives my involvement with KD-UK.

As well as the support they offer to fellow sufferers and their families, an important part of their work is research into treating, and eventually curing the disease. 

Of course, that work relies on continual funding, so every donation is vital.