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WTCF! A Cystic Fibrosis Podcast

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WTCF! A Cystic Fibrosis Podcast

What The CF! A Cystic Fibrosis Podcast

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When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong. What the CF! was born out of a curiosity to learn more, support others, and share experiences while we navigate our own CF journey. We want to tell the stories of others and answer the FAQ's that come along with a diagnosis. We'll seek the knowledge of experts and those living wit ...
 
A dynamic podcast exploring the different experiences people with cystic fibrosis may face during their lives. Gunnar Esiason joins Tiffany Rich and Lea Faraone, otherwise known as the Salty Cysters, to talk about the in's and out's of cystic fibrosis from some of the anxieties and stresses that patients face to some of the lighter sides of the disease. Breathe In: A Cystic Fibrosis Podcast aims to characterize the disease in a positive way while showcasing the challenges that people with cy ...
 
A dynamic Cystic Fibrosis Podcast, educating people on the different experiences and lives that CFers face. Discussing all sides of CF, including the fearful, the ambitious, the emotional and the challenging. A podcast that is purposely made to educate but more importantly comfort fellow CFers and support the CF community💛
 
Cystic fibrosis (CF) is one of the most prevalent global congenital disorders, affecting some 70,000 individuals worldwide and 30,000 children and adults in the United States. While clinical efforts are expanding worldwide to improve diagnostic testing and treatment approaches for this progressive lung disease, targeted therapies for CF against any specific mutation remain elusive. The Cystic Fibrosis in Focus series gathers the latest information from leading medical experts devoted to adva ...
 
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Dr. Harutai Kamalaporn sees 12 of the 30 patients diagnosed with CF in Thailand. The challenges she faces are: lack of medications, equipment and sweat chloride tests at all three hospitals. Dr. Kamalaporn continues to advocate for more testing machines. . Some countries, such as India and Bangladesh have developed their own indigenous method for s…
 
Ingrid chats with Helen Ulyatt, mother to an active 9-year-old CFer called Sophia. They chat about how she prepped for starting school and all the fears and worries surrounding this milestone, as well as managing trips to camp and hopes for the future. ZOONO DISCOUNT CODE INSIDE! Tune in to get your discount code to receive 2 x 50ml Zoono hand sani…
 
If you are taking one of Vertex’s medications, you may be aware that the GPS program at Vertex recently made changes to its co-pay assistance program. In September of 2022, a patient advocate at Vertex reached out to The Bonnell Foundation. The reason for the Zoom meeting was to explain how the co-pay assistance program would change in 2023. It’s m…
 
19 year old Atef Choudhury and 18 year old Naim Mashni are both sophomores at MSU, and they have found their voice. Atef has a nephew with CF and that is what made him want to start to raise awareness on campus. And so Cure Found MSU was born. In their young lives this two men have accolades to long to list here, just know they are smart and motiva…
 
Did you know your child should visit a pediatric dentist? Did you know that people with CF generally have better dental health than the rest of the general population? Are you familiar with a toothbrush that connects to your phone and will let you know if you're brushing your teeth correctly? Did you know if your CF child has reflux (very common in…
 
Not everyone with CF enjoys the same level of care. Tragically it depends where you live. Some countries don’t even recognize the disease. If a country doesn’t recognize CF, that means medications aren’t available and there is no health insurance coverage. All of us are working together to change the world for people who have CF. Doing his part is …
 
Attorney Jen Weber is 49 years old and waiting to have her third lung transplant. Weber lived in Indiana until this third transplant, when she had to move to Durham, North Carolina to be near her transplant hospital: Duke University Health. Weber also started a non-profit five years ago that meets inpatient and outpatient needs ( for example: pajam…
 
We’re talking today with the founder of A Kid Again, Kathy Derr. It is a nonprofit organization that plans family adventures in many states across the U.S. and the adventures are free to families. Kathy Derr and two of her friends started the nonprofit camp 25 years ago. Kathy’s son Christopher died from an inoperable brain tumor. She started A Kid…
 
We discuss the journey to diagnosis for our son Orson at six months old. From pregnancy and birth, tests, diagnosis and processing the news. It's emotionally a highly charged episode but we end up laughing quite a bit, which we're pleased to be able to do together through this crazy journey. We'd love to hear from you. You can leave a voice message…
 
Dr. Jennifer Shedden of Genentech reached out to the Bonnell Foundation to raise awareness about cystic fibrosis in the Hispanic community, and the non-CF community. We started the CF Familia page! We recently did a podcast together that focused on our CF Familia page. This page on our website focuses on the challenges the Hispanic community runs i…
 
The Children’s Organ Transplant Association (C.O.T.A), helps people waiting for transplants, fund the procedure and everything that surrounds it. Laura Bonnell learned about COTA when her nephews needed a bone marrow transplant (not CF related). When someone needs a transplant, they usually living in their home state and getting a transplant in ano…
 
In this episode, Ian and I review the brilliant film Never Better and chat with its writer-director Julianne Fox. Julianne, who has CF herself, filmed Never Better in late 2020 and received great reviews when it played at film festivals. W#e chat about how the project got started, her life with CF and more. We hope you enjoy this episode of the pod…
 
CF and Colon cancer, the risks are higher than you may be aware. Anna Payne is 35 years old and was diagnosed with stage 4 colon cancer a year ago.Anna is advocating to get colon cancer screening down to age 25 for people with CF. She’s in the fight of her life, and she's fighting for others. I hope this podcast reaches CF families that need to hea…
 
In this episode, Ian and I get to grips with life with a CF toddler. It's a general update on how CF affects our everyday life, plus a few tips on navigating a few milestones as your little CFer grows up. As always, we end up blowing off steam with many fits of giggles. We hope you end up finding some of this info useful regardless of our gaffs or …
 
Andrea Hoffman and Alyson are twins born with CF. Andrea is 30 seconds older than her sister. The women attend Ohio Northern University. As you will hear, they are over achievers! This is the twin’s Senior year of college. Andrea plans to attend law school after she graduates. Andrea advocates on the state and federal level. And she sits on the Rar…
 
Dr. Jennifer Shedden, with Genentech, reached out to the Bonnell Foundation to see if we were interested in raising awareness about cystic fibrosis in the Hispanic community, and the non CF community. The Bonnell Foundation said "YES". In this podcast we talk about all the barriers that people of color face when trying to get diagnosed, and we focu…
 
As we wrap up pride month, we have a lovely story to tell you. It’s Wes Hawkins story. All of us at The Bonnell Foundation know there are many people with CF that are in the LGBTQ PLUS community. Host Laura Bonnell saw a post by Wes Hawkins on FB. He shared his CF journey and his coming out story. The Bonnell Foundation wanted to share his story on…
 
My Mom, Lois Teicher is a famous sculptor in the U.S. and a strong cystic fibrosis supporter. In this podcast we talk about how grandparents feel when they hear the CF diagnosis. I realized that I was always focused on how our family was doing, and never really asked my Mom how the diagnosis of Molly and Emily impacted her. So we talked all things …
 
Former Detroit News reporter, Laura Varon Brown talks to The Bonnell Foundation about losing her Detroit News photojournalist husband, Jim, too cystic fibrosis. In this podcast Laura Varon Brown talks about his life, legacy and they daughter Molly they had together. The couple married in 1985, before the cystic fibrosis gene that causes cystic fibr…
 
Cystic Fibrosis is not a disease that only impacts white people, but for years and years, it’s been treated that way. Now thanks to organizations like The National Organization of African Americans with Cystic fibrosis and their founders, Michele and Terry Wright telling the story of his late diagnosis (he was 54 years old), diagnosing people of co…
 
The Bonnell Foundation continues to raise awareness about cystic fibrosis and that anyone can be born with CF. Dr. Johanna Zea-Hernandez, pediatrician Pulmonologist in Grand Rapids. She Universidad Nacional de Colombia School of Medicine in Bogotá, D.C., Colombia. She completed her pediatric residency at Mount Sinai School of Medicine – Elmhurst Ho…
 
Cystic Fibrosis awareness month continues with today's show. In this episode, Host Laura Bonnell is joined by frequent podcast collaborator Beth Vanstone. Beth, a Canadian talks about the state of health care in Canada. We start with a brief history of how CF drugs and treatments are approved in Canada, including Kalydeco, Orkambi, and Trikafta. Th…
 
Most of the New Zealand CF community know Lizzie McKay, a 30-year-old person with CF who works for CFNZ as a Communications Coordinator. Her friendly and bubbly nature makes her easy to like but her story is not an easy one to hear as a mother of a little one with CF. In this episode, we discuss Lizzie's role at CFNZ and the organisation where she'…
 
I was on a zoom conference, I was bored. it was about using my zoom account, so it wasn’t extremely engaging. I continued to listen while I wandered away from the conference and was looking on the zoom page that recommended podcasts. One caught my eye…actually the word Cystic Fibrosis jumped out at me for obvious reasons. Then I saw the Lost women …
 
Marc Cotterill is a CF rock star if you ask me. He is from the United Kingdom, and has cystic fibrosis. Marc recently turned 40 years old. I love his Instagram presence because he is wonderfully direct about everything CF. You must check him out on IG. Marc lives with his girlfriend Emma and her young son, Noah. Marc is a Business Architect, he wor…
 
To honor pioneers in CF during May, CF Awareness Month we are showcasing this pioneer. Dee Acquazzino was Pediatric Clinic Program Coordinator for 44 years as the CF at the Nebraska Regional CF Center in Omaha, NE. Dee was around when enzymes weren't encoded and saw the difference in absorption when the change was made. She talks about what she lea…
 
Chris Macleod is a Candian with CF who was one of Canada's first patients on Kalydeco ten years ago. He’s now 52 and has advocated for CF for many years. He’s also written a book called Beating The Odds: 11 Lessons to Overcome a Health Crisis and Lead a Resilient Life. We talk about his life with CF, his career as a Lawyer and how that's helped him…
 
This is the story of one Ukraine family escaping war to save their daughter Anna, who has CF. Kateryna, husband Andrew and 4 year old daughter Anna were awakened by the sounds of bombing at 5:00am in Lviv, Ukraine. The reality of war was at their doorstep. They were terrified. Anna has CF and they knew they couldn't wait, they escaped that morning …
 
Welcome to Season 2 or What the CF! We're so happy to be back and ready to share lots of CF stories about treatment with you.If you're part of the CF community and not aware of Trikafta (or Kraftrio) then you've been living under a rock! This 'miracle' treatment isn't yet funded in New Zealand and we want that to change ASAP. Edward Lee is a 39-yea…
 
We’re honored to talk with Dr. Ryan Thomas on this podcast. Dr. Thomas is one of the Bonnell Foundations Advisory Council members. A Grosse Pointe native, Dr. Thomas is a wealth of information. A Michigan State University Grad Dr. Thomas went to Wayne State Medical school. He did his pediatric residency at Beaumont Hospital with a fellowship at Rai…
 
Mallory Smiths book, Salt in my Soul was published posthumously by her mother, Diane Shader Smith (husband Mark) after she died from CF at the age of 25 years old. Smith died after a double lung transplant. So many people have read her book. I bought it years ago, but was never able to read it. I have a mental block, lots of CF books sitting on my …
 
Bijal Trivedi is a journalist and an author. She spent 8 years writing the book, Breath from Salt. It's an in-depth look at how parents with CF children banded together to start what is now the Cystic Fibrosis Foundation. Trivedi weaves a beautiful story of all the players, from CFF President Bob Beall, to Joe and Kathy O'Donnell's involvement and …
 
Rebekah Farley is someone you may know from Instagram or the QVC channel where she is a Plus size model. Rebekah and her husband Craig,have a 6 year old daughter Madelynn with cystic fibrosis and a son Craig junior who does not have CF. CF Mom’s connect instantly, as we did. She lives inWest Chester Pennsylvania. Rebekah Farley aspires to be a voic…
 
Gunna Esiason is 30 years old and is living with cystic fibrosis. He inspires his peers in the CF community every single day. If you have seen Gunnar’s blog, follow him on twitter, listened to his podcasts or have read any of his articles in the paper you know he gets straight to the point. Gunnar uses his celebrity to educate and raise awareness a…
 
The future of CF pulmonologists! We all can play a role. Thanks to the generosity of SPARK Healthcare, Biophyiscs Corp. Drs. Susan Millard and Ahmet Uluer, (along with help from the Bonnell Foundation) a grant was issued (in honor of Dr. Samya Nasr) to the University of Michigan pediatric pulmonology department program. As Drs. Lumeng and Saba tell…
 
Kim Bowman, and her husband Brian are two of the strongest people I know. Kim and I have been friends for a long time. We both had two children with cystic fibrosis…she had two boys, (Blake and Brett) and I have Molly and Emily. Blake only made it to his 14th birthday. He died from cystic fibrosis in January of 2015. It’s every parent’s nightmare, …
 
Dr. Heather Walter is a CF Mom. I first heard Heather speak at a Mom's retreat in 2021 (via zoom). I was so impressed with her I asked her to speak on this podcast. She is the Director of the School of Communication at The University of Akron and a professor of organizational communication. Dr. Walter’s research is focused in the area of organizati…
 
Joan Galinken is a CF Mom who lives in New Jersey. Her son Jesse is 33 years old, married and a new father. It's been a long road of ups and downs like the CF journey always is. In the height of the pandemic Jesse got his new lungs. Joan talks about the fear of getting transplant in June of 2020, and about the transplant itself. She would love to c…
 
Steven Strickland is 28 years old and he's dealt with his own mortality more than he'd like. He was hoping to get a double lung transplant, but had to get rid of a deadly bacteria first (not once but 4 times). Then, after waiting years to be listed and almost dying....he said, "No." You'll hear why in this podcast. Today he's an employee at the App…
 
61 year old Lorna McEwan lives in Saskatchewan, Canada where she is the oldest person living with cystic fibrosis. She's a well known advocate, working to help CF families. She lost two brothers to the disease and her son. How can she even get out of bed in the morning? Is that what you're thinking? Well wait until you meet her in this podcast! She…
 
Michele Ciancimino is an Integrative Nutrition Certified Holistic Health Coach. Michele provides coaching and support to individuals dealing with Cystic Fibrosis to help them successfully implement the nutrition recommendations of their care team. Inspired by her daughter’s journey with CF and the powerful impact of good nutrition, this work is fro…
 
How I met Kate Bryan, the 1 Girl Revolution. A mutual friend told Kate about me and The Bonnell Foundation. I was still a news reporter at WWJ, and working on my Foundation. Kate came to my house to record the podcast and we hit it off! Kate has terrific energy and is doing amazing stories on her 1 Girl Revolution podcasts. Kate has an Emmy-Nominat…
 
Ingrid chats to Eilís Moroney, the author of 'Our Baby Has 65 Roses' and mum of a little person with CF - two-year-old AibhÍn, about diagnosis and how writing a book was her coping mechanism.Listen to the podcast for your chance to win a copy of the book, and email your answer to wtcfpod@gmail.com. You can also purchase the book here.Find out more …
 
CF Dad's have a lot to say! They don't gather like CF Mom's do (on zoom or at a gathering), but they do have a lot on their minds. It was wonderful to get my husband Joseph Bonnell and Pastor David Hoffman together to talk about how Dad's think, and what gets them talking about CF. The conversation began after a Dad's retreat couldn't gather enough…
 
Fifty one year old Chris MacLeod has lived a life of lessons, and he wants to share them with you in his new book, "Beating the odds". His life began with a heart condition and then cystic fibrosis diagnosis. As an attorney he fought for clients sometimes while he was on oxygen. His incredible story about remaining focused and present. MacLeod's ad…
 
Cystic Fibrosis Moms, who have never met, have a common bond: they know what a disease does to their child(ren), marriage and to their mental health. Laura Bonnell, Beth Vanstone and Patti Tweed all have one or more kids with the disease. The women came together to discuss all the challenges Moms (and Mums in Canada) face. Their hope is to get Mom'…
 
In Jerry’s latest podcast, we meet Beth Gerritsen – mother to Charlie, who has cystic fibrosis, and Willie, who does not. From raising her boys in the Virgin Islands to moving back to the states, she shares some insight into CF care in the VI, how it impacted Charlie’s health, and more. This video podcast was made possible through an unrestricted e…
 
In his latest podcast, Jerry chatted with Charlie, 11 with CF, and his older brother Willie about the CF-sibling relationship. They talk about spending almost all of their time together, playing sports, their goals, and more. To his fellow CF patients, Charlie says, “Stay strong. Never give up. And always do your treatments.”This video podcast was …
 
International Biophysics Corporation (IBC) creates innovative medical devices. Their devices improve treatment therapies and patient outcomes. For cystic fibrosis patients IBC created the afflovest. Prior to the pandemic Bonnell Foundation founder, Laura BonnellI tried on a vest at the North American CF Conference (NACFC) in Nashville. President an…
 
Jordan Gillette and I met on twitter! Jordan is a long time WWJ Newsradio 950 listener. Jordan started listening to WWJ when his Dad had it on in the car, and he continued to listen to it on his own. Jordan heard my stories on WWJ, and he enjoyed all the WWJ personalities. What he didn't know until he heard my Public Service Announcement (PSA) was …
 
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