AFTER READING THE STORY BELOW, PLEASE TAKE A FEW MINUTES TO VISIT THIS LINK, WHICH HAS DETAILED INFORMATION ON THE STEPS REQUIRED TO ACHIEVE OUR GOAL OF CLINICAL TRIALS, ALONG WITH A SHORT INTERVIEW WITH HUDA ZOGHBI, WHO LEADS THE RESEARCH http://www.401project.com/projects/
This years text"ellis" Anniversary ride will take place on May 5/6th 2017, where a group of cyclists will be taking on the gruelling task of cycling from the Vicarage Road, Watford to Leicester City's King Power stadium, to raise money for the text"ellis" campaign! Not only that...but we will be doing this all in one go THROUGH THE NIGHT!
The 14 fundraisers taking on the 90 mile challenge are:
Richard Page, Chris Page, Gaz Leeson, Nathan Dilkes, Kelvin Blackwood, David Swinfen, Tim Driver, Dave Batson, Anthony Bryan, Chris Nicholls, James Lowe, James Potter and Paul Wood.
Firstly, I would like to say a HUGE thank you to all of these fantastic people for going the extra mile (literally) to raise money for my little boy!
The text"ellis" Campaign was started by myself at the beginning of the 2013/14 football season, to help raise money to find treatment for my little boys rare Chromosome disorder, MECP2 Duplication Syndrome. Every year we now celebrate the achievements of that season by completing the text"ellis" anniversary ride. Below is my story so far...
During Leicester City’s promotion winning 2013/14 Championship season, I took on the challenge of cycling to all 23 away fixtures, to help raise funds and awareness for MECP2 Duplication Syndrome; a rare chromosome disorder my son Ellis suffers from. I am still to this day overwhelmed by what happened during that season; the text"ellis" campaign was the start of something pretty amazing!
Please visit http://www.justgiving.com/textellis2014 to view our JustGiving page from the 2014/15 text"ellis" campaign.
What started, as what some would say was an unrealistic £100,000 target, finished as a £119,000 dream come true!
Every season we now celebrate that success and raise further funds by organising the text"ellis" Anniversary ride, which involves cycling to whichever fixture falls closest to April 25th, the anniversary of the final ride of my campaign in 2014.
In November 2011, just before his 4th birthday, my little boy Ellis was diagnosed with MECP2 Duplication Syndrome, a rare chromosome disorder. Until then, we had always known that Ellis was not achieving the usual milestones a child should, but doctors were unsure as to the reasons why and he was always put under an umbrella of Global Developmental Delay.
Fortunately, our geneticists were eager to find out more and put Ellis forward for a Micro Array Test, a new type of blood test that digs much further into the structure of chromosomes. It was found that he had a duplication of the Xq28 region of his X chromosome.
It was devastating to read that there was a very high possibility that our beautiful little boy may never walk or talk, not to mention suffer daily with seizures brought on by epilepsy. We also learnt that Ellis would always face a battle with recurring chest infections that are brought on by the condition...this would be potentially the most serious problem we would face with pneumonia the most common reason for a shorter lifespan, if not treated quickly and efficiently.
As you can imagine, after hearing this news my wife Leanne and I, went through many emotions, but luckily we reached a stage where we were now ready to fight! We started by researching the internet for as much information as we could find....and came across a fantastic website "The 401 Project". Here we found that research was underway into finding a way to reduce the effects of Rett Syndrome, which is another disorder that affects the MECP2 region of the X chromosome. Using mouse models, they made an amazing breakthrough and not only realised that the effects could be reduced, but actually reversed! This meant one thing...a potential cure! The research is now focused on finding a way to control the protein levels in the MECP2 region of a human being, which would not only cure Rett Syndrome, but also all other disorders caused by duplications in the MECP2 region...including Ellis' Xq28 Duplication!
This breakthrough in research has now encouraged many laboratories to focus more time and effort into finding ways to control the protein levels in the MECP2 region. As you can imagine research costs money and with the condition so rare and unknown, it is difficult to raise funds through the usual government channels.
Huda Zoghbi, from the Baylor College of Medicine, Houston, Texas, who originally discovered the MECP2 gene and it's role, was looking for funding to start research into the screening of FDA approved pharmaceutics that could potentially regulate the levels of the MECP2. This project alone required $733,000 to commence!
After completing my challenge in April 2014, thanks to the generous donation of £45,000 from the Leicester City owners, enough money had been raised to fund this project we had so desperately wanted to see commence. In July 2014 myself and Ellis, along with my wife Leanne and younger son Theo, flew over to Houston, Texas to present a cheque for just short of £120,000 to Huda Zoghbi and her research team at the Baylor College of Medicine.
During our visit we were shown around the laboratories and listened to presentations from the research team, explaining the project in greater detail. They were also very excited to share with us further channels that they had discovered during their research; in particular a new strategy that could potentially be a stepping-stone to the dream scenario of a drug based treatment. Unfortunately, even if a drug is identified, it would require FDA approval, a process that can take many years.
The new project was a therapeutic based strategy, aimed at testing whether reversibility of MECP2 Duplication Syndrome can be achieved using a pharmaceutical like molecule called Anti Sense Oligonucleotides or ‘ASO’ for short. To put this simply, these ASO’s are readily available for use and therefore do not require FDA Approval. If a strategy like this was a success, then Ellis could start to have treatment much earlier, whilst a drug based product was identified and approved for human use.
The cost of this project was $230,000 and as usual we were in a situation where there was no way of funding this unless we, as parents, raised the money ourselves.
After efforts from many families across the globe, we were fortunate enough to have enough funding available for this new project to start. Part of our fundraising effort included a team of 16 LCFC fans including myself and members of Ellis' family taking to the saddle again for an anniversary ride to Burnley in April 2015, raising over £5,000.
Last year we were very excited to announce that after another trip to Houston, in September 2015, for the bi-annual family conference, the team at the Baylor College of Medicine had proved that MECP2 Duplication Syndrome is in fact REVERSIBLE using the ASO approach!!! There was still a long way to go including further tests with mice and then primates, but we hoped in the next few years human clinical trials would be able to start!
With the help of other families all over the world, with children affected by MECP2 Duplication Syndrome, we aimed to raise $1.2 million to help take this research into clinical trials!
We have recently received the news that a firm plan has been put in place, with the steps required to advance to the stage of clinical trials within 2 years. Families have been fundraising so hard over the past year and we are now at a stage where the amount required to get to this point is down to $350,000!
We really are getting closer and closer to achieving our goals and making our dreams a reality!
For more information about the text”ellis” campaign, please visit www.textellis.com
All I can ask, from the very bottom of my heart, is for anyone reading my page to send just one text message to my beautiful little boy Ellis and help us to fund that cure! Text MECP77 (with your donation:- £1, £2, £3, £5 or £10) to 70070. Alternatively you can make an online donation via this Just Giving page.
All funds donated via Just Giving will go directly to Reverse Rett, a fantastic charity who kindly oversee the ‘MECP2 Duplication Fund’, from which every penny is used to fund the research projects that we hope will one day cure Ellis' condition.