CFStrong: Inform. Educate. Empower.

Archie on work and CF In this episode of the CFStrong podcast, we speak with Archie, a former teacher, now marriage celebrant and musician, about all things work. We chat how Archie navigates work and CF including discussing CF at work. And Archie shares his advice for managing work and CF. Transcript   Coming Soon. This podcast was published in December 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our listeners.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback - CFStrong for Adults living with CF","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_1670301195052","label_pos":"above","required":"","options":[{"errors":[],"max_options":0,"label":"Yes","value":"Yes","calc":"","selected":0,"order":0,"settingModel":{"settings":false,"hide_merge_tags":false,"error":false,

Murray on transplant In this episode of the CFStrong podcast, we speak with Murray who had a double lung transplant ten years ago. We discuss Murray's experience pre and post-transplant, how he managed the mental and emotional side of transplant, what he's been up to for the last decade and his advice for approaching transplant. Transcript   Coming soon. This podcast was published in November 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our listeners.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6_3';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback - CFStrong for Adults living with CF","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_1670301195052","label_pos":"above","required":"","options":[{"errors":[],"max_options":0,"label":"Yes","value":"Yes","calc":"","selected":0,"order":0,"settingModel":{"settings":false,

Tony on clinical trials Curious about clinical trials? Interested to learn more about how to take part? Keen to hear from someone who has been there and done that? In this episode of the CFStrong podcast we chat with Tony about his experience getting involved in clinical trials. Tony shares his experience and his advice for anyone interested in putting their hand up for a clinical trial. ”Look, I would say it's important they do the homework, read a little bit about the medication, if you can. Nine times out of 10, it's there's nothing about on the internet, but in saying that the hospital staff, you know, or the clinical staff or whoever the person that's helping you with the trial, they give you enough information, to give you a very good understanding of how the drug works and what the background is behind it. I would basically make a list of questions and I would ask, you know, the clinical trial staff, all the questions and concerns I have. Transcript Voiceover: Welcome to the CFStrong podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management. But please remember, this is not medical advice. And you should always follow the advice of your clinic team regarding your health. Kirby: Hello, I'm Kirby and in this episode of the CFStrong podcast, we're talking with Tony about his experience participating in clinical trials. Thanks so much for joining us today, Tony. Can you start by telling us a little bit about yourself? Tony: Hey, how you going. So, I'm Tony Hanna. 39 years old, live with cystic fibrosis. I live in Melbourne, Victoria. Kirby: Awesome. Thanks, Tony. And yes, thank you so much for joining us. Let's chat a little bit about clinical trials. So first off, what is a clinical trial? Tony: Basically, a clinical trial is a research study. It's performed on people who basically basically want to try out different drugs or, you know, hospitals or medical fields or even companies. They want to try different drugs. So, they put you in a study where a drug is trialed on you. And basically, that's that's a little bit about what a clinical trial is. Kirby: And when did you first participate in a clinical trial? When was your first one? Tony: Um, my first clinical trial would have been? I was about 25 years old. Yeah, I was 25 years old. That was my first clinical trial. Kirby: So that's about 15 years ago, roughly. Yeah, Tony: Yeah. Yeah. Wow. Kirby: And how many trials have you been a part of in the last 15 years? Tony: I've actually, I've done three in the past. And I'm actually doing one at the moment so four in total, including this one. Kirby: Can you tell us about one of the clinical trials that you have been on in the past? I know we can't talk much about the one that you're on at the moment. But can you tell me about one of the trials that you've been on in the past? And talk to me about what what that whole experience was like? Tony: Yeah, yeah. Look, the experience, it's overwhelming. It's a, it's a good feeling. It's definitely going into a trial, you, you question it, it's normal. And once you're in the trial, it's like you're in the zone, you know, things are going good, and you feel good about yourself. For me, you know, when I did my last trial, which would have been about, was pre COVID, it actually felt, felt good. Going in there was overwhelmed. A little bit hesitant. But with reassurance, I kind of went in with, you know, basically, a lot of knowledge, it was a good feeling, exciting feeling. Straight off the bat, I felt a change and improvement. This was an inhaled medication, which I did. Definitely,

Sinus and CF In this episode of the CFStrong podcast, we discuss sinus and CF with ear, nose and throat specialist, Dr Catherine Banks; president of CFPhysio and experienced physiotherapist, Jen Hauser; and co-host of the CFStrong podcast and adult with CF, Sam Lefoe. The wide-ranging conversations covers just what our sinuses are, what the symptoms of sinus disease are and why it can be challenging to diagnose for people with CF. We also cover what the treatment options are and where to find more information. Transcript   Coming Soon. This podcast was published in October 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our listeners.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6_9';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback - CFStrong for Adults living with CF","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_1670301195052","label_pos":"above","required":"","options":[{"errors":[],"max_options":0,"label":"Yes",

Bryce on travelling with CF Travelling with CF can sometimes feel daunting. There's a lot to think about. But Bryce, a teacher from NSW who lives with CF, says the effort is more than worth it. In this episode, Bryce chats about travelling with CF, the tips and tricks that worked for them and their advice to anyone wanting to travel. Transcript   Welcome to the CF Strong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first-person stories, conversations with health professionals, friends, and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember this is not medical advice and you should always follow the advice of your clinic team regarding your health. Sam: Hello and welcome to the CF Strong podcast. Today we have Bryce Blackmore back again. Today we'll be talking about traveling with cystic fibrosis. Myself and Bryce are both pretty avid travelers. We wanted to come together and discuss our experiences and maybe even share some tips and tricks with other people with cystic fibrosis who would like to travel. Like, we want you to know that's possible. Bryce, would you want to start by maybe just telling us a little bit why you believe travel is so important and how come you have done so much travel in your time, and also where you've gone? Bryce: Yes, thank you. Travel is really important. Well, I mean, for multiple reasons. I probably didn't know exactly what I was going to get out of it when I first started traveling. It all began when I was a kid. My parents are very avid travelers as well. They've traveled all over the world, much before I was born, and they continued to do so and so they had that passion already. When I was born, they wanted to continue that. They took us to places like the usual kind of destinations, Bali, et cetera, Thailand, and then that extended to America when I had, I was lucky enough to have a make a wish, to Disneyland when I was a kid, which was extremely lucky. Then it just kind of ignited something inside of me, my family, my brother as well, to just continue traveling. They were always big on going to weird and whacky places and not necessarily all the tourist stuff and getting us to kind of be a little bit independent when we were traveling as we kind of moved up and through the ages. Then, I just wanted to see the world. It was just too much to see and not enough time and I realised that if I'm going to be here, let's just get everything in, pack it in there as much as I possibly can. It just sounded like the best thing to do. Any opportunity that I had, as soon as I finished school, I jumped straight into a degree in teaching and science degree and then immediately, just kept saving money to travel and every holiday break at the end of the year from uni, I'd always just go somewhere different. Third world countries were a great place to start and then extended out to Europe and then a lot of other travels. I've kind of done a lot of Thailand, Vietnam, Cambodia, that area, Bali, Americas, Canada, and then a whole heap of countries through Europe, India, Nepal, yeah a lot of them. I just absolutely love it. I mean, there's just so much to get out of traveling about learning about who you are and then just seeing different people, different traditions, customs, how the world works outside of our little bubble. It's got everything to give and it takes very little away from you. I think it's just worth doing for everybody. Sam: It's interesting actually, because what you were saying before about your family being very avid travelers, it's very similar to me because when I was younger my parents took a massive risk and relocated to America with like three younger kids because they've always been all about travel and adve...

CFPhysio and navigating fatherhood part 2 This episode of the CFStrong podcast is thanks to our collaboration with CFPhysio This is the second episode to navigating fatherhood with CF. Sam, a young man with a dedication to his daily routine, and his health shares with us some of his journey with CF. Sam, who has a very full plate of life, on top of juggling a chronic health condition walks us through some of the challenges, the ups and downs, and the decisions when starting a family. Sam is honest in sharing his experiences learning how to prioritise the things that bring him joy whilst upholding the tasks that keep his health. CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more. This podcast was published in July 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our listeners.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6_15';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback - CFStrong for Adults living with CF","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.",

CFPhysio and navigating fatherhood part 1 This episode of the CFStrong podcast is thanks to our collaboration with CFPhysio Sam, a young man with a dedication to his daily routine, and his health shares with us some of his journey with CF. Sam, who has a very full plate of life, on top of juggling a chronic health condition walks us through some of the challenges, the ups and downs, and the decisions when starting a family. Sam is honest in sharing his experiences learning how to prioritise the things that bring him joy whilst upholding the tasks that keep his health. This first episode join Sam and his physiotherapist Robyn as he shares some of his early life with CF and his health journey. CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more. This podcast was published in July 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our listeners.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6_18';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback - CFStrong for Adults living with CF","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation ...

Kate on parenting and CF In this episode of the CFStrong podcast, we speak with Kate about navigating CF and parenting. We discuss Kate's journey to becoming a parent, how she manages her health while parenting and how she talks with her son about CF and what the future looks like. ”Now as he's a teenager, it's easy. But when he was little, I really focused massively on my health as well as parenting... you look at people that have got multiple kids, child three or four just fits in, right. So that's sort of the approach I took with my health and CF. So almost, you know, bizarrely, almost like my first child is CF, and my second child is my son. So he just had to fit in around it, which sounds really ruthless. But you know, without my health as a parent... all the wheels are gonna fall off. So I've got to keep as many wheels as I can, on myself, so I can do the job as well as I can. Transcript Voiceover: Welcome to the CFStrong podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management. But please remember, this is not medical advice. And you should always follow the advice of your clinic team regarding your health. Kirby: Hello, my name is Kirby. And in this episode of the CF strong podcast, we're talking with Kate about CF and parenting. Thanks so much for joining us, Kate, can you start by telling us a little bit about yourself? Kate: Hey, Kirby. Um, so as you said, my name is Kate. And I'm 52. And I've got CF and I live with my husband and my son. I've got a 15 year old son. And I work part time very part time as a social worker. Kirby: So you're a mum? Kate: Yes. Kirby: Did you always want to be a mum? Kate: Good question. Look, yes, I did. But when I met my husband, I was 32 I think. So I decided from a CF perspective, I'd missed the boat. So the poor man, we went on our first date. And we actually met a person, well intentioned friends. Anyway, we went on our first date, and I just thought, Oh, this is ridiculous. I'm not going to start a relationship with someone who wants kids if I can't have them. So, you know, towards the end of our first date, I'm going look, what are your thoughts on having kids? And he's going yeah, great. Great. And I'm going right, so this has to be pretty much a last date. Because I'm too old to have kids from a CF perspective. Anyway. And then he was going well, it's a first date, let's just wait and see how we go. But here I was being really, I guess black and white and thinking, I don't want him to get attached like, I don't want to get attached to him, if it's gonna, if kids and my ability not to have them is going to be a deal breaker later. So he's just going well, let's just see you know how second date goes. And we can go from there. But yeah, so I did want kids, but I had decided that at 32, I had sort of missed the boat. Yeah. Kirby: And then what happens next? Because obviously, we all we know now that you have a teenage son, so what happened next? Kate: So what happened next? So we dated for a while and and then we started talking some more about kids. And he was going well, I don't see why. You know, you're saying you can't have kids, but you're so healthy. And also going well, you know, average life expectancy with CF is 37 and you're being 32. You know, that's not an ideal situation of kids. But obviously, I was thinking, I mean, I was really well. And I was thinking that 37 wouldn't apply to me. But I was still, you know, keeping an open mind. So then we started to do research, we were actually, we're both from a science background. So even though I'm a social worker,

Bryce on work, family and CF In this episode of the CFStrong podcast, we speak with Bryce, a teacher from NSW, about work and family and how he manages both while also taking care of his health. ”A lot of people who are coming in to having a family think that they need to be on top of it all the time, you just, you can't be and it's hard. And it's tough. And it's not going to be easy all the time. There's certain things you can do to make it easier. But sometimes I'm just not and it's, something's got to give. And you've got to make the decisions and concessions as to what's going to give. But always trying to make sure that health kinda comes first. Transcript Voiceover: Welcome to the CFStrong podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management. But please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health. Sam: Hello, everyone, and welcome to the CFStrong podcast. My name is Sam and today we have Bryce, Bryce would you like to introduce yourself. Bryce: Yeah, absolutely. I'm on the man. I go by he/him. I am 33. I'm a secondary science teacher, I teach chemistry as kind of my major area. And I have cystic fibrosis. Sam: Lovely to have you on the show. Can you just start by kind of talking to us about your job and how did you kind of figure out that teaching was what you wanted to do with yourself. Bryce: Um, I've always kind of known that I wanted to help people, I didn't really know what that really looked like. I spent a lot of time just thinking about how I could go about helping people. And that kind of changed over time. As I kind of went through high school, I kind of thought about all the different options. And I thought that maybe nursing or being in the police force or something, is something I could do. But with my condition, I didn't think either of those two kinds of things were kind of best suited to the work that I would end up doing. So I ended up switching to-- I really enjoyed science was the main big thing. I really, really enjoyed science had some great teachers, and it's just kind of how my brain works. Not very good at English, any of those kind of written works. And so I kind of moved towards that way. And I just said, how could I help people and I think teaching people, I think I had something to give, and something to offer to others. So that's how it all started. Sam: Excellent. So just going back to what you were saying, do you think that obviously having cystic fibrosis is a quite a big thing to consider when you're looking at their career path, do you believe that really affected how you went about, say, looking for a career? Bryce: This is an interesting thing, I think I was quite privileged to have a really, really supportive household as I grew up, and not to say that other people don't, I just think I'm very lucky. I was kind of brought up with the mentality that regardless of my condition, I'm going to be here forever, like a normal person, and I was treated accordingly. And the expectations were that regardless of my condition, I'll need to be exercising regularly, I'll need to be, you know, doing all the things that everybody else was doing. And that included work. The main consideration was more about what germs could I pick up. And so something like nursing, which I was really interested in having a bit of a background in science just wasn't going to work just because of the exposure at the time. And it just didn't seem like the right thing for me. It could have been, maybe, but it just wasn't going to work.

CF and the NDIS In this episode of the CFStrong podcast we speak with Ben from Trusted Care, a subsidiary of CF Queensland, about the NDIS. We explore what the NDIS is, how people with CF are accessing support from the NDIS and what advice Ben has for anyone thinking about applying for the NDIS. ”It's about educating people in the NDIS. That's real advocacy, helping people become educated and better equipped to understand and learn the way to speak about the NDIS, the way to approach the NDIA, the way to access all of that. It's all an education process for people. Advocacy is education in my opinion. And it's a really important part of the NDIS. Ben, Trusted Care Transcript   Voiceover: Welcome to the CFStrong Podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first-person stories, conversations with health professionals, friends and partners. Just a heads-up guests may share their personal views about treatments and health management. But please remember this is not medical advice, and you should always follow the advice of your clinic team regarding your health.  Kirby: Hello, my name is Kirby. I'm the digital content producer at CFStrong. And I'm joined today by Ben Smith, the head of business development at Trusted Care, a subsidiary of CF Queensland for a discussion all about the NDIS. Ben, thank you very much for joining us today. Perhaps you could introduce yourself and tell us a little bit about Trusted Care.  Ben Smith: Thanks Kirby. Yes. So, I started with Trusted Care late last year. So, Trusted Care was created by Cystic Fibrosis Queensland, and what they saw was a need for NDIS service provisions within the cystic fibrosis community. So how it's broken up into work with the cystic fibrosis community is that the service provision side of it, so our support services and any direct service that we work within the NDIS and with participants, it's rolled out across the whole of the NDIS sector.   So, any person can work with Trusted Care. However, at the same time, a lot of our services are aimed at the cystic fibrosis community. So, when the idea was first created, and when it was implemented, a lot of the services, which is a little bit of a mishmash of services for a provider, it was actually based on the cystic fibrosis community and the needs in that area.   So, all of the revenue that's raised through Trusted Care goes directly back into the charity, Cystic Fibrosis Queensland. And aside from the NDIS service provisions, there is a lot of work that goes on within the cystic fibrosis community around the advocacy to actually access the NDIS.  So, unfortunately for a lot of people with cystic fibrosis, it's been a struggle to actually access the NDIS. So, what Trusted Care, what myself is here for is actually to create a bit of an avenue to gain some understanding around the NDIS. Not everybody with cystic fibrosis is going to be able to access the NDIS, but there is a really large cohort that should really have access there.   So, it's working with the community to kind of give them a little bit of a better understanding around the NDIS, and what improvements in their life they can actually gain from NDIS funding.  Kirby: Let's talk a little bit about the NDIS. I'm going to ask you a really big question so, feel free to give me a very simple answer. What is the NDIS?  Ben: The NDIS, well, it's an acronym, the NDIA love in acronyms. So, the NDIS is the National Disability Insurance Scheme. It is overseen or governed by the National Disability Insurance Agency. So many years ago, the disability services were governed state by state. So, each state had their own disability funding, and they would grant those funds to various providers within their own state.   The NDIS is a federal scheme. So, it works in every state and territory, and it doesn't matter what state or territory you are...