Living With Cystic Fibrosis
136 episodes - English - Latest episode: 20 days ago - ★★★★★ - 20 ratingsLiving with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire
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Episodes
Kate Bryan of 1 Girl Revolution
October 18, 2021 04:00 - 1 hour - 57.1 MBHow 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-Nominated short documentary “The Girl Inside” about incarcerated women. You can also her the incarcerated women on Kate's podcast series. Go Kate...
CF Dad's have a lot to say!
August 23, 2021 04:00 - 32 minutes - 29.7 MBCF 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 Dad's to hold the conference, and so we started talking! If you're interested in talking to Joe or Pastor David, please shoot us an email and...
Canadian Author Chris MacLeod (who has CF)
July 12, 2021 04:00 - 36 minutes - 33.3 MBFifty 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 advice is good for anyone...whether you have CF or not. Link to Chris's Book: https://www.beatingtheodds.ca/ For more information on The Bonnell...
Mums to Moms: talking CF from Canada to the U.S.
July 05, 2021 04:00 - 28 minutes - 26.2 MBCystic 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's talking to each other about all the challenges they face. We will feature other Moms and clinical experts too. We want your input so please s...
Neal Smith
May 31, 2021 16:00 - 28 minutes - 26.2 MBInternational 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 and Ceo David Shockley was show parents, patients and doctors the vest. Shockley is a wonderful, down to earth person who is commitment to maki...
Jordan Gillette, Trucker with CF
May 24, 2021 04:00 - 34 minutes - 31.1 MBJordan 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 that I had two daughters with cystic fibrosis. Jordan is a truck driver and he has CF. On his long trips he does his treatments in the truck....
Andy Lipman, Author
May 17, 2021 04:00 - 38 minutes - 35.6 MBForty seven year old Andy Lipman talks about what propelled him to write several books and start the CF Warrior Project. You'll be inspired by Andy's story! Lipman is a positive role model, who defied all odds to become a college graduate, Olympic-torch bearer, runner, advocate, author, husband, and father. Dedicated to finding a cure for this genetic disease, Andy works tirelessly to raise awareness and funds for the terminal, invisible disease. For more information on The Bonnell Foundat...
Representative Mike Mueller and his sister Madeline Elmhirst (who has CF)
May 10, 2021 04:00 - 44 minutes - 40.9 MBRepresentative Mike Mueller's older sister was diagnosed with cystic fibrosis (CF) at four years old. Growing up with a sister having CF gave Rep. Mueller a lot of compassion for people living life with a health challenge, and impacted his life of public service. The two have a strong bond of love and understanding. It's a heartfelt story about the fear about what CF does to his sister, his fears, pushing through it. Rep. Mueller also is the co-author of the resolution to make May, CF Aware...
State Representative Jim Ellison is committed to cystic fibrosis
May 03, 2021 04:00 - 21 minutes - 19.5 MBState Representative Jim Ellison is a long time friend to the Bonnell Foundation and it's founder, Laura Bonnell. Bonnell and Rep. Ellison met when she was a news reporter at WWJ and would call on Rep. Ellison for a comment, or she caught up with him on the road. Bonnell told Rep. Ellison about her Foundation, and the reason she started it was because her girls had the disease. Rep. Ellison (and his wife Jodie) were all in, right away. Each year Rep. Ellison introduces a resolution to make ...
Child number 5 has CF: Lily and Jon in shock at first, then learn to live with CF.
April 26, 2021 04:00 - 49 minutes - 45 MBLily and her husband Jon had 4 children and they were content. They bought a little farm in Ohio. Jon is a former Marine now working as a civilian to support his family. Then months after a tubal ligation, she found out she was pregnant! Before baby #5 made her debut...Lily faced some serious health issues and then their daughter Bonnie was born with CF. Hear their amazing story. For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/ Vertex Pharma - ...
Breathe Bravely: Giving Voice to CF. Our guest Ashley Ballou-Bonnema
April 12, 2021 04:00 - 47 minutes - 43.5 MBAshley Ballou-Bonnema was featured on CBS Sunday Morning, with Jane Pauley. That's when I saw her, and screamed from the couch! I backed up the program to get her name, and knew that I had to get in touch with her. She shined so brightly in that moment, as she says on her Breathe Bravely website, she was "Giving voice to CF." Ashley's brother also had CF. She describes how life was growing up with a brother who wasn't diagnosed for the first 7 years of his life, and how it affected her ...
Scientist, Poet, author, introducing Dr. Paul Quinton
March 29, 2021 04:00 - 49 minutes - 44.9 MBDr. Paul Quinton's early discovery of the defect in CF that prevents chloride ions from crossing cells changed our CF world, and his work allowed us to get to where we are today. When he made his discovery he yelled, "Eureka!" Dr. Quinton, now 76 years old has cystic fibrosis so this was personal. He actually diagnosed himself at the age of 19. The Bonnell Foundation loves this man! For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/ Vertex Pharma ...
National Organization of African Americans with Cystic Fibrosis (NOAACF)
March 08, 2021 05:00 - 32 minutes - 29.9 MBThirty thousand people in the United States have cystic fibrosis, and 5 percent of those people are African Americans. At least that's what the statistics show. Michele and Terry Wright believe (and the Bonnell Foundation agrees) that the percentage is actually higher. The problem is that people who are African American aren't being properly diagnosed. This is why the couple (Terry has CF) started The National Organization of African Americans with Cystic Fibrosis. Terry wasn't diagnosed ...
The Middle East CF Association
February 24, 2021 05:00 - 47 minutes - 43.9 MBThe Middle East CF association (MECFA) is working to make lives better for people cystic fibrosis. Christine Noke is the co-founder and CEO of MECFA. The stories you will hear in this podcast are sometimes gut wrenching and unimaginable. It will also inspire you to help raise awareness about CF everywhere, and make sure that someday everyone has a level playing field in healthcare. Noke says their goals are simple - to improve: Life expectancy and quality of life for CF patients regional...
CF Vests 4 Life
February 01, 2021 05:00 - 44 minutes - 40.9 MBCF Vests 4 life was started by Rod Spadinger and Mark Tremblay. They're on their journey to becoming a 501(c)3. They're doing great work helping people all over the world get the medical vests they need (to break up that thick, sticky mucus in their CF lungs). They also help with medications. In this podcast we will talk about what they do, who they have helped and some of their biggest challenges. Touching stories about people with CF all over the world. For more information on The B...
CF in Egypt Episode 1 - Dr. Samya Nasr
January 25, 2021 05:00 - 36 minutes - 33.2 MBDr. Samya Nasr, Director of the CF Clinic at the University of Michigan hospital, and Professor of Pediatrics. In 1997 Dr. Nasr began talking to doctors in her native country of Egypt about the fact that many CF patients were not being diagnosed. Physicians there (and the Ministry of Health) didn't believe CF existed in their country. In 2007 Dr. Nasr convinced doctors it did exist after testing people with symptoms and diagnosing 1,000 patients. Dr. Nasr talks about the challenges faced...
CF in Egypt Episode 2 - CF Dad Anas Mansour
January 25, 2021 05:00 - 29 minutes - 27.1 MBThirty-five-year-old Anas Mansour has 5-year-old twin boys with cystic fibrosis. He lives in Cairo, Egypt. Mansour and his wife are trying to keep the boys as healthy as possible, but it is challenging. The disease isn't officially recognized yet in Egypt, so insurance doesn't cover medications. The medications they do have access to aren't like anything we have in the United States. Even basic care, such as getting your hands on digestive enzymes for example, it is difficult and costly....
CF in Egypt Episode 3 - Dr. Samya Nasr and Dr. Maggie Naguib
January 25, 2021 05:00 - 34 minutes - 32 MBDr. Maggie Naguib works at Cairo University in Egypt and is a Professor of Pediatrics. She talks to Host Laura Bonnell in this podcast, along with Dr. Samya Nasr from the University of Michigan hospital. Dr. Nasr is the Director of the CF clinic and professor of pediatrics. Dr. Naguib shares her struggles as a doctor in Egypt who has helped diagnosed 1,000 people with cystic fibrosis. This is thanks to the help of Dr. Nasr who travels back to Egypt once a year. Dr. Nasr arranged for swea...
CF in Egypt Episode 4 - Dr. Eman Fouda and Dr.Samya Nasr
January 25, 2021 05:00 - 31 minutes - 28.5 MBTwo doctors, (one who works in Egypt and one in the U.S.) talk about health inequities. In Egypt life expectancy for people with CF is 8 years old, it’s 50 years old in the U.S. Why? Dr. Eman Fouda works at Ain Shams University in Egypt. She is a Professor of Pediatrics. Also on this podcast is Dr. Samya Nasr, Professor of Pediatrics at the University of Michigan Hospital and Director of the CF Clinic. Dr. Nasr has helped diagnose 1,000 CF patients. She hopes to diagnose 10,000 more over ...
Bike to Breathe
September 18, 2020 04:00 - 25 minutes - 22.9 MBBike to Breath is coming up quickly (Monday the 21st of September through Friday the 25th). Two friends of the Bonnell Foundation, and the CF Community are getting on their bikes and riding from Boston to Pennsylvania to raise awareness about cystic fibrosis. This is a Boomer Esiason Foundation event with CF Ambassador Jerry Cahill of New York getting on his bike, and joined by Emily Schaller (from Detroit). Emily is the Founder of the Rock CF Foundation. Please like, subscribe, and comm...
CF Get Loud, the Canadian perspective.
September 10, 2020 04:00 - 41 minutes - 37.7 MBBeth Vanstone talks about how a CF diagnosis thrust her into the world of advocacy. The two Moms (Laura and Beth) quickly find they have so much in common, from victories to challenges, even though they're living in different county's. Please like, subscribe, and comment on our shows, wherever you get your podcasts. Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundatio...
CF Mom Tribe
May 15, 2020 04:00 - 48 minutes - 44.3 MBLaura Bonnell (Detroit), Kat Porco (Montana), Jen Caruso (Delaware) and Siri Vaeth (California) have have 5 children with cystic fibrosis between them. The kids are ages 14 to 25 years old. This CF Tribe of Moms has seen a lot. All of us have almost lost our kids to the disease. We're all going through the same challenges and joys. We wanted to share our hopes, fears, realities and plans for the future with all of you. Please like, subscribe, and comment on our shows, wherever you get y...
CF Foundations: from California to Michigan working together
May 08, 2020 04:00 - 46 minutes - 42.5 MBI am so proud to bring you our CF partners from around the Country, (Siri Vaeth, CFRI, Inc., Lee Becker and Jerry Cahill, Boomer Esiason Foundation, Brian Callanan, CFLF and Emily Schaller, Rock CF Foundation) we do our individual work with our respective CF Foundations and come together as part of the CF Engagement Network (CFEN). CFEN focuses on issues that impact our entire CF communities. Our thanks to Ryan Gough for getting us together. We had candid conversations in this podcast. It ...
The Bonnell girls talk CF: from London, England to Detroit
May 01, 2020 04:00 - 27 minutes - 25.4 MBThe reason the Bonnell Foundation began was because I had two daughters with cystic fibrosis. This episode is my girls perspective. They live life to the fullest. They both traveled to Nicaragua for a mission trip (different years with their High School class), studied abroad in Spain (Emily) and England (Molly). I decided not to let my fear run their lives. They have missed party's, school trips, events, school, college days and taken it in stride. They have skied with a picc line, been h...
Project CF Spouse
March 03, 2020 15:33 - 15 minutes - 14.3 MBWhen you think about cystic fibrosis, you probably think about the patient, and the parents who take care of them until they're adults. But what about a patient's spouse or partner? When a person starts dating someone with CF they probably don't know the patient's history, nor can they grasp the complications of the disease right away. A person with the disease has had a lifetime to get used to it. The same may be true of their parents. But for a partner, it is an entirely different story....
Translate Bio, Dr Ann Barbier
December 21, 2019 00:00 - 12 minutes - 11.8 MBResources: Translate Bio Website The Bonnell Foundation Email The Bonnell Foundation Please like, subscribe, and comment on our shows, wherever you get your podcasts. Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: [email protected] Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en
Dr Ann Barbier
December 21, 2019 00:00 - 12 minutes - 11.8 MBResources: Translate Bio Website The Bonnell Foundation Email The Bonnell Foundation
Children's special Health Care Services with Dr. Colleen Barry
December 09, 2019 14:31 - 22 minutes - 20.5 MBResources: The Bonnell Foundation Email The Bonnell Foundation Michigan Department of Health and Human Services Please like, subscribe, and comment on our shows, wherever you get your podcasts. Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: [email protected] Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en
Dr. Ahmet Uluer
November 21, 2019 23:51 - 28 minutes - 25.8 MBFor more information please visit the following sites: https://thebonnellfoundation.org http://www.childrenshospital.org/directory/physicians/u/ahmet-uluer https://www.facebook.com/thebonnellfoundation/ Please like, subscribe, and comment on our shows, wherever you get your podcasts. Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: [email protected] Thanks to our spon...
NIH Director Dr. Francis Collins on Trikafta and CF
November 05, 2019 16:59 - 26 minutes - 23.8 MBJust over a week after Trikafta (Vertex Pharma) was approved by the FDA, five months ahead of schedule, five thousand people from the CF community were in Nashville, TN to attend the North American CF Conference. As the Founder/President of The Bonnell Foundation and mother of two daughters with cystic fibrosis I was thrilled to interview National Institute of Health (NIH) Director Dr. Francis Collins. Resources: Dr. Collins Speaks at NACFC The Bonnell Foundation Website The Bonnell Foun...
Singer/Musician Kevf has CF. His story will inspire you, and you'll want to attend one of his concerts.
July 30, 2019 15:05 - 24 minutes - 22.9 MBKarma was at work when Musician Jill Jack called me to say she wanted me to meet a singer/musician named Kevf. His voice was amazing she told me, and by the way, he has cystic fibrosis. I shouldn't be surprised anymore that everything CF comes my way. But I was! We have a big Gala event coming up September 28th, 2019 and I wanted Kevf to sing at our fundraiser. He agreed. His story and music will give you chills and make you smile. Links: Kevf on YouTube Kevf on Facebook The Bonnell ...
Five Feet Apart and the Story That Inspired It
March 28, 2019 16:35 - 38 minutes - 35 MBThe movie Five Feet Apart was inspired by Claire Wineland. The movie’s main character, Stella, showcases Claire’s charismatic and fighting personality. In this honest, raw, and often emotional conversation, Laura talks to her mom, Melissa Nordquist Yeager, about Claire, Five Feet Apart, and life without her daughter. Claire Wineland lost her battle with Cystic Fibrosis in September of 2018, before the release of Five Feet Apart. It's a frank, touching and inspirational conversation. Meliss...
CF Attorney and Patient Beth Sufian
February 19, 2019 23:48 - 51 minutes - 47.1 MBWhen Beth Sufian was born with Cystic Fibrosis in 1965, there were no CF treatments and no prescriptions for enzymes that she could take to digest her food. Beth has dealt with many CF challenges along the way, and it made her stronger and molded her into the attorney she is today. Sufian lives in Texas where she's practiced law for the past 25 years, many of those years with her husband. She focuses on health law so she can help CF patients and people with other chronic illnesses navigate ...
Dylan Mortimer on CF and Art
February 06, 2019 19:31 - 27 minutes - 25.1 MBThirty-nine year old Dylan Mortimer embraces God, life and his family while dealing with the reality of waiting for a second double lung transplant. An artist in New York City, Dylan makes beautiful colorful images of lungs and cells by using glitter. His story is inspiring and emotional. Dylan talks about his brother and mother who both have cystic fibrosis. You'll also hear him talk about the controversial movie Five Feet Apart. For more information on Dylan and his art, check out his w...
CF Mom Roundtable
February 02, 2019 00:45 - 41 minutes - 38.4 MBIn our first episode, Laura Bonnell is joined by Michigan CF Moms Sam and Kim. Laura has 2 daughters in their 20's with Cystic Fibrosis, Sam's 6 year old son Ethan is battling the disease, and Kim shares memories of her daughter Maggie. Between these three women, we take a journey through a CF diagnosis through an entire life with the disease. As you'll hear, Living with Cystic Fibrosis can create many wonderful moments and shared experiences. However, no two journeys are the same. L...
Living With Cystic Fibrosis Podcast Tease
February 01, 2019 12:58 - 48 seconds - 877 KBBoth of Laura Bonnell's daughters have Cystic Fibrosis. Laura founded the Bonnell Foundation in 2010 to bring CF patients and their families together with resources to fight this disease. It may sound strange, but Laura sees the disease as a blessing. Join us as we choose joy. Please like, subscribe, and comment on our shows, wherever you get your podcasts. Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfounda...