As in typical Up with People style we wanted to give something back to the local community and we are partnering with TLC4CF
Tipperary, Limerick and Clare for Cystic Fibrosis are a not-for-profit charity and a fully affiliated regional branch of Cystic Fibrosis Ireland – Registered Charity number CHY6350. TLC4CF is a not-for-profit charity and an affiliated regional branch of Cystic Fibrosis Ireland CHY 6350.
Ireland has the highest number of people living with Cystic Fibrosis in the world and the Tipperary, Limerick, Clare region has the highest number of people in Ireland living with this life threatening disease.
An interesting fact is that the Tipperary, Limerick, Clare region has the highest number of UWP alumni (outside of Dublin) in Ireland, so its a nice fit to work together.
There will be a number of ways we can support the charity during our stay in Ennis:
Volunteer -Should you arrive early and be available on 9th, 10th or 11th April and would like to join local volunteers as they promote ‘ 65 Roses week’ – the National awareness week for Cystic Fibrosis. Please email us at UWPIRL@gmail.com if you would like to help.
The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.” Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease.
THE BIG BUSK for CF will be a fun event at lunch time on Saturday that we can all participate in before we head off to Bunratty Castle. We will be the opening ‘buskers’ for the event in a kind of ‘flash mob’ way! … followed by local musicians – all to raise funds for TLC4CF.
So calling all wana be buskers – if you would like to also join the list of local busters please email us @ UWPIRL@gmail.com
Gala Raffle / Prize Draw for fabulous Irish treasures!
On Saturday evening at our dinner TLC4CF volunteers will make available tickets for € 5 each entering you in to a raffle / draw for some amazing, unique and valuable Irish items! All proceeds going to TL4CF and you could go home with some lively Irish gems!
What is CF?
Cystic Fibrosis is a chronic genetically inherited disease that primarily affects the lungs, digestive, pancreas and reproductive systems. Ireland has the highest incidence of CF in the world! One in 19 Irish people carry a copy of the altered gene that causes CF.
CF is usually caused by the absence, dysfunction, or reduced numbers of multi-functional CF transmembrane regulator (CFTR) protein, which has a key function in regulating the amount of water in airway surface liquid. If the CFTR is not working normally, a thick mucus forms and clearance of bacteria and particles from the lungs is impaired. This leads to persistent lung infections, progressive breathing difficulties and problems with other organs such as the pancreas, liver and reproductive organs.
Thirty years ago, a baby born with CF was only likely to live for a few months but now with advances in medical research and better infection controlled treatment, the majority of people survive well into adulthood. This has led to the need to develop adequate adult as well as child treatment facilities. As people with CF are prone to constant chest infections and malnutrition, segregation from fellow CF patients and strict infection control measures are critical factors in maintaining health and wellbeing for people with CF.
In 2008, the Cystic Fibrosis local branches in Limerick, Tipperary and Clare united to form TLC4CF, with the aim of improving hospital and treatment services and supports for people with CF in this region. To date, nearly € 7 million has been raised through local fundraising and charitable donations to fund the construction of a new purpose built adult CF unit on the grounds of the University Hospital Limerick.
The new CF unit is fully constructed and consists of:
– A 9 bed inpatient isolation facility with separate lobby entrances and negative/positive pressure ventilation. Patient features include a kitchenette and wardrobe (to make longer hospital admissions easier), a desk (for study or work), wifi access and flatscreen TV’s, exercise equipment and a ‘home-from-home’ feel in the room design. This infection controlled ward is also used by non-CF patients when there is spare capacity and subject to strict infection control guidelines.
– An outpatient unit with 5 ensuite treatment rooms.
– A physiotherapy gym with specialist equipment and a lung function lab.
– A family room, triage room, catering kitchen, staff offices, staff changing facilities and ancillary service rooms.
In order to ensure that people from this region can participate in life changing clinical drug trials, TLC4CF has co-funded a technician to help establish lung function baselines and we have also funded a range of specialist equipment such as the Exhlayzer D and the Bronchoscope Suite. This equipment tracks the progression of lung disease and treatment can be better tailored and adapted to individuals.
Psychological supports for adults with CF are also now available within the CF service thanks to seed funding provided by TLC4CF. We also support research and clinical staff training.
Like us and follow all our progress on Facebook and Twitter (@TLC4CF)! To get in contact: