The Trust has received a STRIVE award, created by PTC Therapeutics, Inc to financially aid non-profit organisations that are committed to serving communities of people living with cystic fibrosis.
This one-year award, which is worth $30,000, recognises the Trust's work in patient advocacy, and will help it create resources and services that support and inspire young people to live their lives fully and spontaneously, without compromising their health.
The most creative and sustainable proposals were chosen by the award judges, who were selected for their knowledge of communities of people living with rare conditions.
Holly-Rae Smith, Youth Empowerment Officer at the Trust, said: "We are incredibly grateful for this generous grant from PTC Therapeutics. The award will help the Youth Advisory Group as they explore the use of new technologies to better engage young people and create resources that support them through the transition from paediatric to adult care.
"It will make a huge difference to our work to help young people with cystic fibrosis live a life unlimited by cystic fibrosis.
The Trust's Youth Advisory Group were delighted with the announcement, and some of the members decided to say their own special thank yous to the panel for supporting the Trust's work with young people. Olivia Simmonds, 20, went for a stop motion message (above), while 16-year-old Dommie Taverna recorded this personal message:
If you are a young person aged 11–25 and living with cystic fibrosis or passionate about helping those living with the condition, find out more about joining our Youth Advisory Group.