This October, Shane will take up the challenge to swim solo across the English Channel, from England to France, under the Channel Swimming Association (CSA) Rules and Regulations - a distance of, at least, 21 miles/34 kilometres - and, in the process, raise money for the SynGAP Research Fund (SRF) - https://www.syngapresearchfund.org.

The SRF is a global group of families committed to accelerating the science to cure SYNGAP1 Syndrome, and to supporting each other. Their mission is to support the research and development of treatments, therapies and support systems for SYNGAP1 patients worldwide.

Shane’s wonderful friends, Katrien Deckers and Daniel Frommelt, have been instrumental in setting up the UK/European arm of the fund. In February 2020, Katrien and Daniel’s five year old son, Bear, was diagnosed with SYNGAP1 Syndrome. So, this is a charity that is very close to Shane’s heart.

SYNGAP1 Syndrome is a rare genetic disorder, which is caused by a variant of the SYNGAP1 gene. The SYNGAP1 gene is located on Chromosome 6 and is responsible for producing the SynGAP protein. This protein acts as a regulator in the synapses - where neurons communicate with each other. A variant of the SYNGAP1 gene leads to the gene not producing enough SynGAP protein. Without the right amount of SynGAP protein, we see an increase in excitability in the synapses, making it difficult for neurons to communicate effectively. This leads to many neurological issues in SYNGAP1 patients, including, epilepsy, intellectual disability, sleep and behaviour disorders, speech delay, sensory processing disorder, hypotonia (low muscle tone) and autism.

Currently, more than 1,000 SYNGAP1 patients have been identified worldwide. SYNGAP1 continues to be significantly under-diagnosed, and new SYNGAP1 patients are being identified every week.

Intense therapy can help SYNGAP1 patients improve their skills and reach key milestones. Whilst there is, currently, no cure or specific treatment for the underlying condition that causes SYNGAP1, excitingly, research shows that we can find a way to ‘turn up’ the production of the SynGAP protein in SYNGAP1 children’s brains, and that treatment is, only, a few years away.

The science has come a long way; however, the coronavirus (COVID-19) pandemic has put the SRF back a year, and we are in a race against time, as the SYNGAP1 children’s brains rapidly develop. There is a palpable sense of urgency: the pace and breadth of the scientific innovations has never been greater, and the SRF are closing in on therapeutics that can change patients’ lives. Raising funds to keep up the momentum is critical, and, this year, the SRF have launched a ‘$1M Research Accelerator Fund’ - to benefit research into ground-breaking drug and gene therapies.

100% of all donations to the SRF directly funds research. To-date, over $2.9m has been committed to labs across the globe. Research for treatment is happening in labs located in the United States, Canada, Australia, India and Europe.

The six-hour qualifying swim, in cold water, has been completed. Shane’s English Channel swim is both a herculean task and a life-long dream challenge. The English Channel is a demanding swim; it is the globally-known standard for marathon swimming, and is considered, by many, to be the ultimate long-distance challenge - fewer people have swum the English Channel than have climbed Mount Everest! It isn’t just the distance that is the challenge, though, but, more, the variable conditions that swimmers are likely to encounter - possible wind force 6 and wave heights in excess of two metres, in one of the busiest shipping lanes in the world, with 600 tankers, 200 ferries and other vessels passing through, daily! Swimmers are exposed to the elements unlike any other endurance athlete.

In June 2018, Shane and two other members of Ful-On Tri triathlon club, in Fulham, London, swam the Channel - in a time of 10 hours 30 minutes. They covered a total distance of 46.5 km, and raised money for The Brompton Fountain, a children’s charity. They came within touching distance of being the fastest three-person relay, ever.

Swimming the English Channel is, very much, a gamble, not least, in terms of trying to time the tides and weather exactly right, and we only have a small window of opportunity for our booking: 1-8 October 2022. Shane’s pilot, Reg Brickell, will be keeping a close eye on the latest Channel statistics. When Shane is given the go-ahead, the night before the swim, he will be out on the first boat, on the neap tide - so, likely, an early morning start. You will be able to follow the swim, via live tracking, here: https://www.channelswimmingassociation.com/pilots/viking-princess-ii and https://www.channelswimmingassociation.com/tracking.

Please, help us to make a difference. Any donation, however small, will be greatly appreciated.

With your support, we want to help make this life-changing treatment a reality for Bear, and children like him, so that they can lead the fullest of lives.

Thank you.