CONTENTS Latest News | 1 - 2 *FAQs on The Exclusion of 35 Children with CF from Kaftrio
Member Services|3-5 *New 'Additional Needs' Payment - DSP
CEO’s Message
‘Health care delayed is health care denied’
*Travel Diary: Disneyland Paris
Spotlight | 6-14 Sandy Toes and Salty Kisses - Parenting with CF *Rory and Florence *Carol and Abigail *Caroline, Anna and Jamie
Teen Titans| 15-20 *Keep It Up Ava! *Secondary School and CF by Darcy Grainger
TLC4CF | 20-21 *Redmonds of Roscrea - Happy Days *Limerick Panto Society
CFRI | 22-25 *CFRI Report 2020 *The CFRI
Conference Review| 26-31 *ECSF 2022 Review *CFI Conference 2022 Review
Hospital Hub | 32 *CHI Crumlin - CF Exercise Hub
Fundraising| 33-39
Philip Watt, Chief Executive
There is an well-known saying in legal circles that ‘justice delayed is justice denied.’ The same can be applied to healthcare, particularly where there is a human rights dimension. The exclusion of 35 children with CF from Kaftrio is very much a human rights issue. The inequity of the pricing dispute that caused this problem is further underlined by the fact on the same day that 35 children were denied access, a further 140 other children with CF successfully gained access to Kaftrio. CFI continues to say to those impacted children and their families, ‘we are here with and for you. We will not give up until your rights are vindicated’. CFI is also striving for ‘future proofing’. No other child with CF should endure the same devastation of being excluded from a drug therapy that has been recognised as revolutionising CF care in Ireland and many countries worldwide. Ukraine CFI is pleased to let you know that 3 people with CF from Ukraine are now in Ireland receiving help and care. We have also donated €10,000 to date to support coordinated efforts at a European level, including the direct delivery of medications and support for the Ukraine CF Association. CFI thanks everyone for their support including during 65 Roses week and we will be making a further donation soon.
*Challenges and Events *Thank You
EDITORS: Samantha Byrne & Nicola Delaney Foxe
Philip Watt, CEO, CFI
COVER: Graham and Janice at 2021 Head2Head Walk DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland.
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Spectrum / Summer 2022
