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Podcasts


Podcasts are here! Listen to the Living With Cystic Fibrosis podcast on iTunes, Spotify, Google Play, or your favorite podcast source.

Jordan Gillette, Trucker with CF

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 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. He loves his girlfriend, but even he’ll tell you, his trucks are tied for his love. Jordan talks about how he makes his career and CF work!

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Andy Lipman, Author

Forty 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 Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Reach and read about Andy Lipman: https://www.cfwarriorproject.org
Andy’s family foundation: https://www.wishforwendy.org
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Representative Mike Mueller and his sister Madeline Elmhirst (who has CF)

Representative 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 Awareness month (Rep. Jim Ellison is the other). Rep. Mueller is also the co-author, (along with Rep. Care Clemente and Rep.Jim Ellison) for the Rare Disease Advisory Council.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
To contact Rep. Mueller: https://www.facebook.com/MichiganHouseRepublicans/
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

State Representative Jim Ellison is committed to cystic fibrosis

State 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 May CF Awareness month.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
To reach Rep. Jim Ellison: https://housedems.com/jim-ellison/
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/
For more information on Ashley’s organization, Breathe Bravely, check out: https://www.breathebravely.org/

Child number 5 has CF: Lili and Jon in shock at first, then learn to live with CF.

Lily 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 – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Breathe Bravely: Giving Voice to CF. Our guest Ashley Ballou-Bonnema

Ashley 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 parents’ marriage. Ashley’s brother was very sick and, as she’ll tell you, it took a toll on her mental health as well. Having a chronic and fatal disease is no fun, but it has given her strength and purpose. Ashley will tell us about her marriage to her high school sweetheart, a challenging health journey through her college years, and coming out on the other side with her foundation, Breathe Bravely. You will also be screaming with joy after you hear her story; she’s an amazing young woman.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/
For more information on Ashley’s organization, Breathe Bravely, check out: https://www.breathebravely.org/

Scientist, Poet, author, introducing Dr. Paul Quinton

Dr. 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 – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Project CF Spouse

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
Find Project CF Spouse here: https://www.projectcfspouse.com/
Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

National Organization of African Americans with Cystic Fibrosis (NOAACF)

Thirty 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 with cystic fibrosis until he was 54 years old. Listen to their amazing journey.

For more information on The Bonnell Foundation, find us at https://thebonnellfoundation.org/
Find the National Association of African Americans with Cystic Fibrosis: https://noaacf.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/
Tuskegee information about “testing” of African Americans: https://www.cdc.gov/tuskegee/timeline.htm
Graphic designer: https://cindyromano.com

The Middle East CF Association

The 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 regionally
  • Access to CF Care Centers,
  • Standards of Care
  • Access to necessary drugs and equipment.
  • Research and clinical trials in the region;
  • Awareness about CF and Rare Disease in the region.

Let’s help spread the word.

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
Find the Middle East Cystic Fibrosis Association here: https://www.mecfa.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

CF Vests 4 Life

CF 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 Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
To reach Rod or Mark go to: https://cfvests4life.org
Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

CF in Egypt Episode 4 – Dr. Eman Fouda and Dr.Samya Nasr

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. The two women will share their experience about diagnosing patients with CF. Currently Dr. Nasr has helped diagnose 1,000 CF patients. She hopes to diagnoses 10,000 more over the next few years.

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

CF in Egypt Episode 3 – Dr. Samya Nasr and Dr. Maggie Naguib

Dr. Maggie Naguib works at Cairo Univeristy in Egypt and is a Professor of Pediatrics. She talks to Laura Bonnell in this podcast, along with Dr. Samya Nasr from the University of Michigan hospital. 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 4 sweat tests so that doctors there could start testing for the disease. Families were losing multiple children to the disease without knowing why, until testing began. Hear their challenges and success in this podcast.

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

CF in Egypt Episode 2 – CF Dad Anas Mansour

Thirty 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. And, 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, is difficult and costly. Mansour believes he may have to leave his country to make certain his children get the medications they need. Things are getting better there, but today the life expectancy is 12 years old, whereas it’s 47 years old in the U.S. You’ll hear his heartbreaking story.

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
Sponsor: Vertex Pharmaceutical – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

CF in Egypt Episode 1 – Dr. Samya Nasr

In this episode Laura Bonnell talks with Dr. 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 there. They didn’t believe her at first. In 2007 Dr. Nasr convinced doctors it did exist after testing people with symptoms, and diagnosing 1,000. She talks about the challenges of today (lack of medications), the challenge for the future (getting pharma to license drugs so they will be covered under insurance) and getting patients CF modulators. Dr. Nasr will also explain how desperate CF families are to see all of these challenges met.

For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/
Sponsor: Vertex Pharma – the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Bike to Breathe

Bike 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.

CF Get Loud, the Canadian perspective.

CF Mom Beth Vanstone has an 18 year old daughter with cystic fibrosis. Beth and Laura talk about the challenges people with CF we face in both Country’s. They talk about the Institute for Clinical and Economic review (ICER) and the discriminatory impact that the Quality Adjusted Life Year (QALY) has on people with CF. They also talk about Insurance challenges in each Country.

CF Mom Tribe

Laura 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.

CF Foundations: from California to Michigan working together

I 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 is from the perspective of three people with CF (Emily Schaller; 38 years old, Brian Callanan;44 years old; and Jerry Cahill, 63 years old) along with two CF Moms (myself and Siri) and Lee Becker, Boomer Esiasons’ best friend, CF advocate and partner in the Boomer Esiason Foundation. He is the glue and reality check of our group. Siri comes to us from California, Lee and Jerry from their respective homes in NYC, Brian from Florida, Emily and Laura from Detroit. The one person who couldn’t be on this podcast is the “smartest one among us” said Callanan — Emily Kramer Golinkoff founder of Emily’s Entourage.

The Bonnell girls talk CF: from London, England to Detroit

The 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 hospitalized in England with no family to care for her, but friends rallied. Emily’s daily life is often disrupted by pain from the disease, but she soldiers on. They have been through hell, and now, the pandemic. Their truth, and wise words are in this podcast. I realized parents needed both emotional and financial support. There were a lot of much needed fundraising being done by foundations for research, but in 1994, not much for parents. That’s when I decided it was important to start my Foundation. It wasn’t until 2010 that I had the time to do it. The girls were always in the hospital (usually Emily) and I was working in the field of my dreams: radio news reporter.

 

 

Project CF Spouse

When 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. In this podcast, meet the wonderful Megan Barker, the Director of Project CF Spouse. Her husband has CF. Rob Ronnenberg is in charge of the group’s strategic planning, and his wife has CF. I shared some tears with these two wonderful people; I am so glad to know them. Their foundation is off to a great start.

Dr Ann Barbier

Translate Bio’s Chief Medical Officer, Dr. Ann Barbier was recently at the North American CF Conference where she talked to Laura Bonnell about the exciting work they’re doing for people with CF. Translate Bio, a leading biotechnology company, focuses on pioneering the translation of RNA science into therapeutics, promoting healthy gene expression in people living with debilitating genetic diseases.

Children’s special Health Care Services with Dr. Colleen Barry

We talked with Dr. Colleen Barry about everything from prior authorization, to the future of CSHCS, carved out drugs fee for service and how new drugs like Trikafta will be covered. You’ll be “in the know” after you listen to this podcast.

Dr. Ahmet Uluer

In this podcast Laura Bonnell talks with Dr. Ahmet Uluer of Boston Children’s Hospital and Brigham and Women’s CF center in Boston where he is the Adult Program Director.  The Bonnell Foundation embraces Dr.Uluer ‘s love for the CF community, his time commitment to the CF community, along with his wealth of knowledge about CF that he shares with all of us so freely.  We spoke at the North American Cystic Fibrosis Conference in Nashville, TN about a week after Trikafta was approved by the FDA (Oct. 21st, 2019).

NIH Director Dr. Francis Collins on Trikafta and CF

Just 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.

Listen:

Singer/Musician Kevf has CF. His story will inspire you, and you’ll want to attend one of his concerts.

Karma 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.

Five Feet Apart and the Story That Inspired It

The 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. Melissa also discusses her ever changing role as the founder and Executive Director of the Claire’s Place Foundation which donates to children and families affected by Cystic Fibrosis.

CF Attorney and Patient Beth Sufian

CF Attorney and patient Beth Sufian explains the legal pitfalls of dealing with Cystic Fibrosis and the important differences between Medicare, Medicaid, and Social Security.

Dylan Mortimer on CF and Art

Dylan Mortimer, a 40 year old CF patient and artist, talks to Laura about how Cystic Fibrosis has inspired his art and positive spirit.

CF Mom Roundtable

Laura Bonnell is joined by Michigan CF Moms Sam and Kim to discuss their journeys and shared experiences.

The Living with Cystic Fibrosis podcast is honored to receive the 2021 MarCom Award for Marketing and Communications.

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