It’s time to get back in the saddle!
With the success of the text”ellis” campaign and the continued support of the Leicester City fans and the community of Leicestershire itself, I have decided it’s time to get back on my bike, something I never thought I would do after crossing the finish line in Huddersfield!
We may have funded one ongoing project, but my intention is to never stop until a cure is a reality! To do that, we need to keep raising valuable funds to launch further projects across the world.
During our visit to the Baylor College of Medicine in Houston, Texas, we were shown around the laboratories and listened to presentations from the research team, explaining the current 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 is 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 is $230,000 and as usual we are in a situation where there is no way of funding this unless we, as parents, raise the money ourselves.
Whilst studying the fixture list for Leicester City’s Premiership season, there was a stand out tie; Burnley on 25 April 2015, 1 year on from Huddersfield! It seemed to big an opportunity to miss and I have therefore decided to arrange ‘The Anniversary Ride’. Myself, Chris and Gary (Ellis’ two uncles), along with 16 other cyclists who supported me during my final ride of last season to Huddersfield, will be getting back in our saddles for the 130 mile (approx) trip to Turf Moor. I really hope that this number will grow over the next few months as I invite anyone to join us on the ride to help raise those much needed funds for Ellis and other children suffering from MECP2 Duplication Syndrome.
I am delighted to announce that SkyBet will once again be supporting this event and have even started recruiting members of staff from there head office to join us on the ride.
The event really is open to EVERYONE of all cycling abilities…we will be completing the trip as a team and supporting each other along the way, so even if you haven’t cycled in years, now is your chance to dust off your bike and get in the saddle for what will be a fun and exciting event. What’s more, you’ll be doing something amazing and helping to raise funds for my little boy Ellis.
You can view the new JustGiving page for this event at www.justgiving.com/textellis
To request a sponsorship pack or for further information on the event, please email firstname.lastname@example.org