Because the Rett Syndrome Research Trust is a US-based non-profit organisation, the amount you contribute will be in US Dollars. This will show on your credit card statement in Pound Sterling at the conversion rate at the time of your donation.
Alexander Kelly, Bertie Cornett, Wilfred Marriott, Benjamin Phillips, Leopold Glover and Cameron Sinclair have lost their minds and decided to take up bicycling. And more than that they are planning to cycle 800 kilometres in 6 days from Milan to Rome in what can only be described as the punt of their lives. With very little cycling experience and even less practical sense, these six imbeciles will attempt to climb 18,000 feet in a circuit that is designed for “experienced riders only”, typically foregone by cycling badgers and people wearing fluorescents. With no professional help being sought and a route mapped out on the back of a fag packet, this will provide a serious challenge for all those involved.
You would be forgiven for questioning why they are doing this? The answer is simple: to let you know about Rett Syndrome. Rett Syndrome is a cruel and debilitating neurological disorder that is caused by a mutated gene on the X chromosome. There is no treatment, and no cure. Rett affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed milestones or regression at 6-18 months. Rett Syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. Its symptoms have been described as “autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety disorder…all in one little girl.”
Numerous trials are underway to produce treatments for Rett. Many believe that advances in gene therapy could lead to a cure. Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. There is hope!
Now what we want more than anything it to be able to turn that hope into reality through the funding of groundbreaking research. We want to raise funds and awareness for Rett Syndrome, and we need your help to do so. All proceeds will be going to the Rett Syndrome Research Trust (RSRT), a not-for-profit organisation aimed at achieving one goal: a cure. You can learn more about Rett Syndrome, RSRT, and the research here: https://research.reverserett.org/
This is a cause close to our hearts. One little girl who suffers from Rett (Allegra Kent) is Alexander Kelly’s niece.
Allegra is seven years old. Allegra was the happiest baby, smiling and laughing and engaging people with her sparkling eyes. Until she was about 18 months old she was hitting the usual milestones. Then her language delay became noticeable and gradually she seemed less and less engaged with the world around her. After an agonising four years and endless assessments Allegra was diagnosed with Rett Syndrome, which finally explained why she had developed normally until 18 months. The regression that followed, happening before their eyes, and with no explanation at that time, was the cruelest part of the syndrome for the Kents. Allegra’s mother told us: “When I didn’t know what was wrong with my daughter I worried for her future. Now I worry if she will have a future.”
If there is anything that you can do, we will be forever grateful. Your support will change Allegra’s life and the lives of thousands of others around the world.
For more information on Allegra’s story, please use the following hashtags below. We would encourage you to share anything that you can on social media that would help us in our plight.
Kelly, Bertie, Wilf, Phil, Glove and Cam
#ForAllegra #RettSyndrome #MakingRettHistory
|Jane Kent||$250.00||February 27, 2021|
|Caspar Mould||$25.00||February 27, 2021|
|Olivia Orr||$50.00||February 23, 2021|
|Annabel Eden||$30.00||February 23, 2021|
|Nigheann Enderby||$100.00||February 23, 2021|
|ALEX STEWART-LIBERTY||$40.00||February 23, 2021|
|Anonymous||$100.00||February 22, 2021|
|Onnalee Cubitt||$140.00||February 22, 2021|
|Edward Longfield||$100.00||February 22, 2021|
|Fiona Homan||$100.00||February 22, 2021|
|JON QUESNEL||$70.00||February 22, 2021|
|Will Jackson-Moore||$500.00||February 22, 2021|
|Daryl Neumann||$50.00||February 22, 2021|
|Arabella Kelly||$80.00||February 21, 2021|
|Tim Clews||$20.00||February 21, 2021|
|Tom Cassady||$40.00||February 21, 2021|
|Oliver Jacobs||$30.00||February 20, 2021|
|Thomas Williams||$75.00||February 20, 2021|
|Tom Schmider||$30.00||February 20, 2021|
|Charles Miller||$60.00||February 19, 2021|
|Eloise Melville||$20.00||February 19, 2021|
|George Holt||$50.00||February 19, 2021|
|Christopher Kelly||$70.00||February 19, 2021|
|Lettice Carter||$20.00||February 19, 2021|
|Megan Duckett||$20.00||February 19, 2021|
|Ella Markham||$20.00||February 19, 2021|
|Andrew Barrie||$50.00||February 19, 2021|
|George Mitchard||$50.00||February 19, 2021|
|Cameron Barrie||$25.00||February 19, 2021|
|Stroma Parker||$20.00||February 19, 2021|