Issue 2
Click here to subscribe to our newsletter.
Click here to donate now.
 | ||||
 | ||||
 | ||||
| In This Issue: •The Story of 65 Roses |
| |||
 | ||||
| The Story of 65 Roses Mary became a volunteer for Cystic Fibrosis after learning that her three little boys had CF. Her duty was to call every civic club, social and service organisation seeking financial support for CF research. Mary’s 4-year-old son Richard listened closely to his mother as she made each call. After several calls Richard came into the room and told his mother “I know what you are working for”. Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had Cystic Fibrosis. With some trepidation, Mary posed the question. “What am I working for Richard? “You’re working for 65 Roses” he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.” | ||||
| ||||
| Funds Raised The funds raised from 65 Roses Day will go towards CF research, programs and services. CFA has made past investments into groundbreaking medical tools such as the CF data registry (outlined in the last newsletter) and the CF Quality of Care program (outlined in this newsletter). Both are the first of their kind in Australia and continue to promise better futures for those with CF. We’ve also raised more than $3-million for life-saving research including funding the worldwide breakthrough hypertonic saline therapy. |  | |||
| ||||
| Everyday Hero Be our Everyday Hero! We’d love for you to host a BBQ, party or celebration in the name of 65 Roses (Rose-planting anyone?!). Not only do you get an excuse for a fun day, but the best news is that you can help support CF research too! Check out the 65 Roses Day website “Participate Now” section for more details, or feel free to give our team a call for pointers and tips on making your event more successful (but not more fun – that’s your job!). www.everydayhero.com.au/event/65RosesDay
|
| |||
| ||||
| One Familiar Face and One New This year, our ambassadors for 65 Roses Day will be Kate Daly and Lachie Turner! Kate is the undeniably-cute face from last year’s campaign, and Lachie is one of the leading rugby players in the world. Keep an eye out for appearances from them, and radio community service announcements throughout the month of May. |
| |||
| ||||
| Donations We are getting closer to a cure everyday, and a donation is one of the most powerful ways you can make a lasting gift. We urgently need your help and your gift will make a difference to those facing the daily fight against CF. Please give generously during 65 Roses Day for CF research. | ||||
| ||||
| Every newsletter we encourage you, the reader to submit questions to our expert panel of specialists. Thanks goes out to Dr. Adam Jaffe from Sydney for organising the panel, as well as the medical community that volunteers their time to answer these questions. If you have a question that needs answering – be sure to send it to facebook@cysticfibrosisaustralia.org.au Question |
| |||
| ||||
| Thank you for your support. It has been quite a few weeks of change at CFA since I last spoke to you. With a reorganisation in the office, we are committed to funding as many programs and as much research as possible. Part of this involves spreading our message to Australians everywhere and this year for 65 Roses Day (in addition to using our traditional media and PR) we are also using a focused and coordinated social media strategy through Facebook, Twitter, You Tube and Flickr). Our team has set a goal of 6,500 fans on Facebook by 65 Roses Day (28 May). We are hopeful that this will help to translate to higher awareness, better understanding and more support for Cystic Fibrosis. |
| |||
| ||||
| CFA released a groundbreaking document in 2008 called the CF Standards of Care. This document for the first time laid out optimal conditions to achieve the best outcomes for those with CF In terms of services, staff and facilities. Essentially this publication was a quality-assurance document that the CF doctors wanted to ensure that they were providing the best care. All clinics are now undertaking the process to see how they compare, and will make any necessary improvements. CFA is assisting in the process and we endeavor to complete the accreditation in 36 months. This process has already been completed with success in the USA, Canada, UK and Europe. In short, this program has the goal of ensuring the best care for those with CF, regardless of where they live in Australia. |  | |||
| ||||
| CFA is incredibly fortunate to have the very capable skills of Graham Gourlay at its disposal and… for free! Graham started to volunteer with us in August of 2008 and has been helping us in some capacity ever since! Graham has an incredibly distinguished career. Unfortunately for this newsletter we will have to severely curtail his experiences, but his brief bio is as follows. After many years working in the food sciences area, Graham joined CSIRO in 1993 where he has been responsible for assisting CSIRO...
|  | |||
| ||||
| Created By | ||||
 |
