Newsletters

December 2013

Outgoing President's Report

Merry Christmas Everyone,

Ruth Riach

What a very busy year we have had. We started out with a new President, Heidi Bock, who came to us with a background in fundraising and lots of wonderful ideas about how to increase our income and in so doing, our ability to provide assistance for our members. Thanks to a very strong committee over a number of years, CFACT had enough funds to employ a Development Manager. Working in partnership with CFNSW, we now have Heidi as the Development Manger for both CFACT and CFNSW. I think everyone would agree with me that CFACT has increased its awareness in the community, as well as a number of fundraising opportunities over the last year. 

Over the last year we have had Great Strides, Santa Shuffle and the Gala Evening as fundraisers, along with a number of private and school fundraisers from the CF community.This weekend we are working with the Canberra Cavalry to raise even more funds to benefit our members with a Super Maxi Patio Party.

We have also been busy with advocacy for transition and adult care at the Canberra Hospital, and this work is ongoing.

I have attended a number of events to lobby for Kalydeco and its smooth path through the drug registration and availability process. Working with a number of groups and other bodies, we are continuing to fight for this amazing drug to be available to all who have the G551D mutation.

CFACT continues to support our members through subsidizing the costs associated with living with Cystic Fibrosis. We have changed our membership fee to $0 to encourage all those associated with Cystic Fibrosis in the ACT and local area to be a part of our association and be eligible for the various grants and subsidies we offer. We have recently added genotyping as a service we will subsidize as more mutations become known and drugs become more specifically tailored to the different mutations. There are many cases in the wider community of people not knowing their correct mutations for a variety of reasons.

I would like to thank all our committee members and volunteers for all the time and hard work they have put in to CFACT over a number of years. Every single one of you has made a difference to someone living with Cystic Fibrosis.

Ruth Riach
2013 President (outgoing)

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