Emily's Entourage
Emily’s Entourage is the only non-profit organisation dedicated to fast-tracking research and drug development for rare, nonsense mutations of Cystic Fibrosis which currently effects around 10% of people that suffer from this sadly incurable condition. Their singular goal is to expedite life-saving treatments and a cure for those with nonsense mutations of CF who are waiting with bated and fading breath.
This research is vital for those 10% of CF suffers to ensure they live the healthiest and longest life possible. There may not yet be any cure but a breakthrough in treatment would help to control the symptoms, prevent or reduce complications, and make the condition easier to live with.
The key message of this charity is that no one is left behind, here at Leoli we want to help support this Charity and for the next 6 months we will be gifting 10% of all sales sold from any product made from our 'CF super stars ' cotton jersey prints in Yellow & Mustard.
Reggie's Story
When Reggie came into the world in June 2018 everything was as it should be, but when he was just 3 weeks old his parents got the devastating news that he has cystic fibrosis. This was a heart-breaking situation to be faced with, but as close friends of mine I can say they did and still remain to do absolutely everything in their power to give Reggie the best quality of life and keep his health the best it can be.
Further tests showed that the specific strain he has is of the more severe, effecting only 10% of those with the condition. This means that for those 10% the current medications and treatments available are not effective. This is where the research that Emily's entourage comes in and why it is so , so important that they continue to be supported in order to find that breakthrough treatment that can change the lives of thousands of people.
Cystic Fibrosis is a life limiting, genetic condition that slowly destroys the lungs and digestive system. Currently there is no cure.
Like Reggie, people with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, which cause them a range of challenging symptoms that affect their entire bodies.
It is vital that Reggie and other CF sufferers receive an array of treatments to enable them to live a longer and healthier life. These treatments include different medications such as enzymes to digest their food, antibiotics to treat lung infections, and much, much more. In addition to this they needs a ridiculous amount of exercise and LOTS and LOTS of physiotherapy!
Reggie's parents have to fight every day to keep his lungs as healthy as possible. They spend a large part of their mornings and evenings doing his physiotherapy. This includes manual percussion and vibrations on all areas of his chest and lungs.
As you can imagine doing this day in day out is tough for both Reggie and his parents. If the work that Emily's entourage is doing is successful with their goal, which we absolutely believe they will be then a new treatment could quite literally change the lives of thousands of children and adults like Reggie and their families.