During our time at Miss World we have many rehearsals where we can wear more casual attire. I have chosen to use this as an opportunity to bring awareness and highlight Irish charities by wearing a different t-shirt representing each of them for every rehearsal
Today I'm representing the Julian Benson Cystic Fibrosis Foundation.
The Julian Benson Cystic Fibrosis Foundation is Miss Ireland’s chosen charity partner for 2023.
The Julian Benson Cystic Fibrosis Foundation’s aim is to provide much-needed support and services to CF sufferers and their families.
It was established by one of Ireland’s leading talent agents and choreographers, Julian Benson.
Julian was diagnosed with CF when he was two years old. He was given a life
expectancy of just 13 years of age but has never let it define him.
Through positivity, exercise and a controlled diet, Julian continues to beat the odds today.
Julian understands first-hand the needs and challenges of CF sufferers.
Therefore,he has established the Foundation to make a difference, creating a legacy that will continue to help patients and families have a better quality of life.
This will be achieved through creating a positive therapeutic healing environment for patients to rest, recover and be with their families at a very critical time.
Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1,300 children and adults in Ireland (70,000 worldwide).
A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Symptoms:
People with CF can have a variety of symptoms, including:
- very salty-tasting skin
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
- frequent greasy, bulky stools or difficulty in bowel movements.
Statistics:
- About 25 new cases of cystic fibrosis in Ireland are diagnosed each year.
- Because of newborn screening, most babies with CF should now be diagnosed quickly
- Around 55% of the CF patient population in Ireland is aged 18 or older.
- The predicted median age of survival for a person with CF is in the early and mid-30’s in Ireland.
The impact of CF can vary from one person to another.
There are some people with CF who live until their teens and there are others that live in to their 50’s.
Ireland has among some of the most severe strains of CF and also has the highest incidence (per head of population) of CF in the world, with three times the rate of the United States and the rest of the European Union.
However, it is important that we now have a network of centres of expertise in place and dedicated multi-disciplinary teams lead by specialised CF consultants.
https://jbcff.com/our-mission/
