I’m attempting to raise money on behalf of the Turberous Sclerosis Association. I’m embarking on riding 781 Kilometres including 9990 metres of climbing over 4 sportiff rides (Dragon Devil Wales, Jurassic Beast, Ride London, Le Tape London) this summer all in aid of the TSA. My 8 year old son Boris who was diagnosed with TS at 2 months old and underwent resective brain surgery at 3 months old.
Most of my friends that are reading this will know my son Boris’s story and continued struggles with the complex disease that is Tuberous Sclerosis. The disease offers the people it inflicts and their surrounding family no peace and respite as it attacks every organ at random whilst inflicting a myriad of learning, behaviour and physical disorders.
The TSA charity was formed by a small group of mothers back in the 70’s when very little was known about the disease and they used it as a forum to share stories, support and advice between each other. They had nobody else to turn to for help or support and were very much alone in their struggle with the disease. This was before mobile phones and the internet etc so they had to communicate in the main by letter and occasionally meet up for coffee to discuss the challenges they were facing. Since those incredible mothers with no information or resources to turn to started the TSA it’s grown year on year into an amazing charity that not only leads funding for cutting edge research and clinical trials into the disease but also offers a wealth of information to people afflicted with the disease. Despite the incredible work the charity does and continues to do it’s not a well funded charity and not one of the more well known. This despite one in 6000 children being born with the disease every day and that figure is expected to increase with more accurate diagnosis techniques. Every penny raised for the TSA gets reinvested in the front line searching for affective treatments and driving research into medications. Any money raised for the TSA has a bonified affect on enhancing the lives of the people affected with the disease and as a parent of someone with the disease I’ve seen this first hand. The TSA have led the clinical Research funding of various new treatments and have recently petitioned and lobbied the government into funding the drug for use in the treatment of TSA which was previously denied. This has given hope to thousands of patients with TSA and previously untreatable epilepsy and tumours. Having attended several charity organised conferences and work shops I’ve got to see first hand the incredible projects they have ongoing and also meet countless children and adults that have benefited from the charities work. The TSA community is incredibly inspiring and your donations are making huge tangible difference to people affected by the disease so please dig deep.
The TSA are the only UK charity dedicated to supporting people affected by Tuberous Sclerosis Syndrome (TSC). TSC is a genetic condition that can lead to growths in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. These growths may also be referred to as tumours but they are not cancerous. When they cause problems it is mainly because of their size and where they are in the body. TSC growths have different names depending on which organ they are found in.The impact of TSC varies considerably, with some people being relatively mildly affected (they may not even know they have TSC) and others being more significantly affected. This impact may be evident in the early years, or not until adulthood. Please support me and the TSA by donating whatever you can!