Tour the Cure

Britain's only known five Marshall Smith Syndrome families welcome Dutch cyclists on their 325-mile "Tour the Cure "

Five British families welcomed a group of Dutch cyclists this month during their breathtaking 325-mile tour from Holland to raise awareness for the rare Marshall Smith Syndrome.

The families have children who are the only known cases of the incredibly rare Marshall Smith Syndrome in this country.

The five Dutch cyclists stopped with each of the families during their five-day tour which ended in Oxford. There they handed over a cheque  for more than £10,000 to the medical professor leading research into the exceptionally rare condition.

First stop on the ride was the family of Matthew Strain, who live in St.Albans.  Matthew died in November last year just a few weeks after celebrating his 18th birthday.

St.Albans residents came out in force to welcome the cyclists on the Bank Holiday Monday evening (May 3rd).

The whole tour ran from 6-10 May and raised money for research into the bone metabolism of Marshall Smith Syndrome patients at Oxford University. 

The challenge started at Harwich and ended in Oxford. The stopovers were in each and every one of the five towns where a family has a child with MSS. Chelmsford, St Albans, Hitchin, Daventry, Dudley and eventually (not the most direct of route) to Oxford, via Stratford-upon-Avon.

Marshall Smith is so rare that only a tiny number of cases are known around the world.  The condition involves serious breathing and bone disorders and serious nutritional, mental and development problems.

The fund-raising tour was raising money for the Marshall Smith Syndrome (MSS) Foundation which sponsors research into the condition. The charity has also set up a crucial support network which helps families with the syndrome around the world. Their website is http://www.marshallsmith.org/

The Oxford University research team will be looking specifically at the bone abnormalities of MSS patients.  The research could explain and lead to treatment of the severe respiratory problems suffered by the children, which can prove life-threatening in later life.

The research is led by Rajesh V. Thakker at Oxford’s Centre for Diabetes, Endocrinology and Metabolism, and Raoul C. Hennekam from the  Department of Paediatrics and Translational Genetics, Academic Medical Centre, Amsterdam (The Netherlands).

Leader of the cycle trip was Liesbeth Laan, the mother of a six-year-old boy with MSS.

Liesbeth said: “To cycle 325 miles in five days was an amazing challenge, especially considering England is a lot less flat than our native Holland! It was a lot of training but knowing that MSS patients struggle with their breathing every day, we managed to make it all the way.”