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Please support our marathon runners and our charity

Fundraising for charities during the last couple of years has been extremely difficult and sometimes virtually impossible.  Small unknown charities have been really affected as they generally get very little funding from other sources. This year the Virgin Money London Marathon will again be running a virtual marathon alongside the organised race for the masses. This eventlets runners select their own routes and have a full 24 hours to complete the 26.2 miles on Sunday 3rd October2021.

The Charity

I am a trustee of a little known rare disease charity, Bardet-Biedl Syndrome UK (BBS UK) and BBS UK has secured three charity places.  When I was told that two of the places were still to be taken up and did any of us know of anyone who could run a marathon, I had nothing to lose and asked a couple in the village where I live, Alconbury, if they would be interested.  

The Runners;

They said YES, and they were eager to support BBS UK.  Newlyweds, Bruce & Cheryl Staines will be running for us on 3rd October 2021 at Grafham Water. Bruce is a director of Brookview Glaziers Ltd and is well known in Alconbury.  When I asked why they were doing it, Cheryl said because they love running (well she does and has already complete eleven marathons) and Bruce enjoys a challenge!!  They like to support the small unknown charities, especially if there is some sort of tenuous link.  They aimed to complete a proper training schedule, but unfortunately their wedding, work and ill health has got in their way, but they promise to do their best.

My connection;

I became a trustee to try to help to raise awareness and funds to provide support for the individuals who are affected as well as their families.  Two of my grandchildren who live in Huntingdon, have inherited this rare disorder which affects approximately 1 in 100,000 babies.  There are a number of symptoms of this complex condition but the main one is visual impairment which often leads to blindness.  Currently Bradley, who is 14, still has a little sight remaining, but we do not know for how long.  His younger sister Jessie is also affected.  The funds raised by the charity provide support, information and advocacy services including a weekend family conference, social and activity weekends as well as member forums, information leaflets and newsletters.

Judith Aylott

Trustee  

Further information about the charity can be found at www.bbsuk.org.uk

Registered charity: 1181244

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