Dave Almond (Rotary Club of Chelmsford) will be interviewing Alex Robbins of Hemel Hempsted, mother of Lexi, on www.chelmsfordcommunityradio.com on Sunday 19th December 2021 between 10.00am and 12.00pm
Finding a Cure for FOP
Fibrodysplasia Ossificans Progressiva
It's every parent's worst nightmare to find out that their new-born child is diagnosed with a rare disease that's deemed incurable. But in Lexi's case, new treatments are close to being available and her parents are asking for support to help Lexi and other children in the same circumstance stand a fighting chance at life.
The disorder gradually replaces muscle and connective tissue (such as tendons and ligaments) with bone. This in turn restricts movements and leads to severe physical disability. Many refer to it as turning their bodies to stone. This condition is accelerated by any minor trauma such as falling over. Only 1 in 2 million people are affected by FOP but it is genetically random. Lexi and many others like her cannot have any injections, dental work or have children, as any trauma to the body will lead to extra bone growing, preventing her from moving. This condition often starts as babies with the 'luckier ones' starting later in life, up to 8 years old.
Whilst Lexi was born with deformities affecting her toes and thumbs, she is currently well and thriving. However, as she grows and matures the impact of the condition will become more pronounced.
The good news is that privately funded research into the condition has started, and the hope is that a cure will be found in the next 4 - 5 years. However, funding is required for this.
FOP Friends (www.fopfriends.com) is a trust registered as a charity no.1147704, which aims to promote ongoing research into FOP and its related conditions by supporting current and future research projects, as well as supporting familie impacted by FOP.
FOP Friends is recognised by HMRC for Gift Aid and its accounts/financial returns are up to date. It has received no funding from government contracts or grants.
Alex and her family have remained strong and positive and have put all their efforts into promoting a crowd-funding campaign which has alredy raised in excess of £100,000. At the same time Alex and her family are petitioning Parliament to secure full recognition of the condition by the NHS, thereby securing future funding for early dignosis, treatment and possible cure.
The Rotary Club of Barton-le-Clay is very impressed by the courage and tenacity shown by Alex and her family and plan to stay in touch with Alex, publicise her efforts and encourage wider Rotary support to help with the FOP campaign. We would especially like to encourage support from Clubs in District 1260 (Beds, Bucks and Herts) in this initiative.
If you would like to help, please visit https://www.crowdfunder.co.uk/finding-a-cure-for-our-little-lexi
For more information please visit: https://www.focusonfop.com
'What We Do' Main Pages:
Friday 24th September 2021 If any pensioner would like an afternoon tea box delivered to them on that day please telephone 07931-684079 to leave your name, address and telephone number. A member of the Club will then contact youmore
joining: Peacebuilding and conflict prevention, Disease prevention and treatment. Water, sanitation and hygiene. Maternal and child health. Basic education and literacy. Community economic development.more
Countdown to World Environment Day, choose a task every two weeks to help out the Environment. Complete one activity per two weeks from the calendar between 22nd March 2021 and 5th June 2021 (total 6 activities).more
Following an appeal by Maggie Herod of Silsoe. Club members donated food to the Luton Foodbank. Follow this link by going to POPULAR PAGES at the bottom of this main page and clicking on the last link. https://www.justgiving.com/campaign/maggiewalkmore
RI President R. Gordon R. McInally calls for Rotary to create hope in the world. "The goal is to restore hope — to help the world heal from destructive conflicts and, in turn, to help us achieve lasting change for ourselves."more
RI President Holger Knaack’s theme for 2020-21, Rotary Opens Opportunities, asks Rotarians to create opportunities that strengthen their leadership, help put service ideas into action, and improve the lives of those in need.more
Club night on Tuesday 8th August 2023 was a visit to TFSR Milton Keynes. Club members were very active with cleaning and refurbishing hand tools. The evening was rounded off with a fish & chip supper.more
Globally, five billion people have no access to safe and affordable surgery when they need it. Mercy Ships operates the largest charity-run hospital ship in the world, taking free medical care and surgery directly to those who need it most.more
Our purpose and passion will help us Imagine everything Rotary is truly capable of! With 1.4 million worldwide, we have a chance to make even a greater impact on our communities and around the world.more
· Some look a bit spooky · Andy has great background, just needs an orchid in there · Surely IPAD has a name. · Andrew left the party briefly, hence only 19/20 pictured · Not sure where Simon is.more
RI President Gordon R. McInally calls for Rotary to create hope in the world by working for peace and mental wellbeing. He urges members to engage in tough conversations and earn the trust that’s necessary to realize these values.more
RI President Shekhar Mehta is urging members to become more involved in service projects, saying that caring for and serving others is the best way to live because it changes not only other people’s lives, but also our own.more
When someone suffers a major trauma, the quicker they receive specialist emergency care, the more likely it is that the treatment will prevent death or serious disability. This is referred to as the ‘Golden Hour’more
R I President Mark Daniel Maloney's theme for 2019-20, Rotary Connects the World, asks Rotarians to strengthen the many ways that Rotary Connects the World, building the connections that allow people to unite and take action through Rotary service.more
Rtn. Derek Hardy has been awarded a District 1260 Service Award for outstanding service in promoting Rotary's capability in supporting projects in the international arenas. In recognition and appreciation of his dedicated service to Shelter Box.more
Our vision is to see a world where no family is without shelter after disaster. Our teams work with disaster-hit families around the world, offering emergency shelter and other essential items to support them in rebuilding their lives.more
A fun and enjoyable night was spent barn dancing in Barton-le-Clay Village Hall on Saturday 30th March 2019 Music from the group Abella and the caller was Andy Rouse. Highly tasteful Hog Roast supplied and cooked by John Fraser and Clair Burtonmore
The bee orchid has been the emblem of the Rotary Club of Barton-le-Clay since its foundation. The orchid, Ophyrs apifera var. aurita, grows wild on the Chiltern Hills behind the village of Barton-le-Clay.more