Essex Freemasons give support to little known Fragile X Syndrome
Essex Freemasons start the process of understanding more about Fragile X Syndrome
At the latest Burntwood Lodge, The Charity Stewards’ Lodge, meeting at Chingford Masonic Hall on 6th November, Pete Richardson, Managing Director of the Fragile X Society, gave an emotive and eye-opening presentation on this hidden condition at the Festive Board, where over 30 brethren and family attended.
Fragile X Syndrome (FXS) is a genetic condition, affecting around 1 in 4,000 males and 1 in 6,000 females. It can cause a wide range of difficulties with learning, as well as social, language, attentional, emotional, and behavioural problems. Some may experience connective tissue issues such as difficulty breast-feeding, hypotonia, hyper flexibility, flat feet, recurrent ear infections and mitral valve prolapse. FXS is the most common inherited cause of learning disability. In addition, approximately in 1 in 250 females and 1 in 600 males are carriers of the Fragile X pre-mutation and may develop symptoms of a Fragile X Premutation Associated Condition such as tremor/ataxia syndrome or ovarian insufficiency. Therefore, Fragile X consists of a family of genetic conditions.
The Fragile X Society aims to improve the lives of those affected by Fragile X and associated conditions by providing information and continued support to families and professionals they work with. Working together with those affected, the Society supports an inclusive community of people who understand the specific needs of Fragile X.
This Charity had been brought to the attention of the Charity Stewards Lodge after meeting Derek Dellow when he was in the Chair at Henry De Gray Lodge No. 6627 last year. Derek has a son who has this condition and had made it his Charity for his year. Derek and his wife Susan attended the White Table where Pete presented and gave the members there, some of their own experiences.
After the meeting the Lodge presented £500 to Pete for the furtherance of research and assistance in this condition. Plus, Steve Hall gave another £1,100 that had been raised at a summer barbeque organised by the members of Henry De Gray Lodge and hosted by Steve Bruyel.
Pete Richardson thanked everyone for the donations, and said, “The money will go directly to supporting families with help and advice, and those who are identified as carriers to plan their future families.”
Chris Hicks, Provincial Grand Charity Steward (ProvGChStwd), said, “Genetic conditions such as Fragile X Syndrome are some of the most underdiagnosed and unknown conditions affecting us today. Any advance in awareness, study and research are positive steps in the understanding of this and other conditions, support is needed at many levels.”
Read more about Fragile X by clicking this link: https://www.fragilex.org.uk
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Top (L-R): Chris Hicks (ProvGChStwd), Steve Hall, Pete Richardson, Susan Dellow, Derek Dellow
