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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.

CF in Canada with Beth VanStone

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. The Canadian government was ready to install new regulations that would have had the unintended side effect of Trikafta not being available there.
Many Americans assume that Canadian health care coverage is better. Beth gives us an honest look at the shortcomings of the healthcare system in Canada.
Laura and Beth talk about the need for an international approval process for new drugs and treatments for rare diseases, so patients don’t have to wait for each country to approve every treatment. The two talk about how a collaborative, patient-centered discussion would benefit so many. The discussion includes the topic of Insurance companies and Pharma. Companies are often vilified, but it’s going to take all stakeholders to affect change.

Thanks to our sponsor:
Viatris: https://www.viatris.com/en
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/

Lost Women of Science

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 of science podcast and read the description. It was about science pioneer, Dr. Dorothy Anderson. I didn’t know anything about her, how could I not know anything about her? .Thanks to Dr. Anderson, CF was diagnosed. Next, I read a description about the podcast and listened to every episode about Dr. Anderson, over and over again. Host and Executive producer Katie Hafner does a wonderful job telling the story with her voice, and the voice of others. Hafners co-executive producer, Amy Scharf is with us today to talk about all that they uncovered about Dr. Anderson’s life.

Amy is a bioethicist at Memorial Sloan Kettering Cancer Center in New York City. Amy is also the Chair of Board of Children’s Aid, a non-profit that provides comprehensive social, educational, and health services to children in NYC’s underserved communities and an Advisory Board member of the Johns Hopkins University Berman Institute of Bioethics. We’re honored to talk with her.

Lost Women of Science Website: https://lostwomenofscience.org/
Lost Women of Science Podcast Season 1: https://lostwomenofscience.org/season-1
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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/

Musician, Influencer, and Business Architect Marc Cotterill

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 works with lots of different businesses to help them change and improve.
When I started following Marc on social media I was hooked on his creative videos. He creates videos and music for clients and for his own passion projects, He uses his musical and creative talents to raise awareness about all things CF.

Marc’s Instagram: https://www.instagram.com/m4rccotterill/
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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 pioneer, program coordinator, Dee Aquazzino

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 learned while working at the Nebraska clinic, and about her hope for the future. Hint: she sees a cure for CF in the future.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our Sponsors Vertex and Viatris.
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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/

Kateryna’s story. She is a CF Mom who recently fled Ukraine.

Kateryna lived in Lviv, Ukraine. When they heard bombing outside their home at 5:00am they decided it was time to leave their war torn country. They are now refugee’s in Germany, living with friends. Kateryna, and her husband Andrew continue to care for their 4 year old daughter who has CF. In this video podcast you can see the worry, and tears because of all they have endured.

Ukraine refugee and CF Mom Kateryna Koval’s story

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 by getting in their car and waiting in the long line of traffic to escape. They were able to take Anna’s CF vest and medications with them (unlike some of the other 900 CF families in Ukraine who had to walk to flee). They’re now refugees in Germany. You’ll be moved to tears by her story. She’s mentally overwhelmed and worried about their future. Is Ukraine still their home, or did they leave it forever? She doesn’t know the answer. Most importantly Anna is being seen by a CF doctor in Germany. Kateryna was worried her daughter might not get the care she needed, or be able to get refills on CF medications.
Rod Spadinger is also featured on this podcast. His CF Vests for Life Foundation does great work by getting CF Vests to people around the world.

CF Vests for Life Website: https://cfvests4life.org/
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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/

Dr. Ryan Thomas

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 Rainbow Babies in Cleveland. Dr. Thomas is the CF clinic director at MSU. We talked to Dr. Thomas about what research is going on at the clinic, and so much more.

The Cystic Fibrosis Pulmonary Microbiome. October 2020 https://www.thoracic.org/about/ats-podcasts/the-cystic-fibrosis-pulmonary-microbiome.php
Bacteriophages as a therapy for Cystic Fibrosis. May 29, 2018 http://www.thoracic.org/about/ats-podcasts/bacteriophages-as-a-therapy-for-cystic-fibrosis.php
https://msutoday.msu.edu/news/2021/no-more-mucus-trikafta?utm_campaign=spartan_winter_22&utm_source=mag&utm_medium=print&utm_content=inspire&fbclid=IwAR3c7huDb761GuMZEmvOr0__6Y6hG0wjwlfchABa9oswZFJ6M_VtkwI2IZM
A restructuring of microbiome niche space is associated with Elexacaftor-Tezacaftor-Ivacaftor therapy in the cystic fibrosis lung https://www.sciencedirect.com/science/article/pii/S1569199321021317?via%3Dihub#sec0018
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/

Salt in My Soul

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 shelf that I can’t read. I am living this life, I am raising not one but two girls with cystic fibrosis. I didn’t think I could handle any of these books, but I bought them, and they sat on my shelf.

Serendipity happened to me, as it always does with CF related incidents. I was on a zoom webinar, got bored, and started looking at their Ads. One popped out at me: Lost Women of Science with NY Times reporter Katie Hafner. She did a four part series about Dr. Dorothy Anderson, who discovered in 1938, that CF existed. So for whatever reason, it seemed time to start reading all these books I had — with my girls at 27 and 24 years old, it was time to delve into everything CF.

At this time Diane Shader Smith and Director, Will Battersby were debuting their film, Salt in my Soul. It was Mallory’s story on film. It featured her videos, writings, her story. I didn’t know what to expect, but after watching it I felt like Diane was my CF Mom Soulmate and I had to talk to her. That’s where our story begins.

In this podcast you’ll hear from Diane and Will. We talked about everything from Phage therapy that could have saved Mallory, to staying strong and pushing for more in the world of CF.

Will Battersby: @Battersby4Will
Diane Shader Smith: @dianeshadersmth
Film: @SaltInMySoulDoc
More on phage therapy: @YalePhage
Salt in My Soul Website: https://saltinmysouldoc.com/

Author Bijal Trivedi

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 all the other parents intertwined along the way. The scientists contributions are worked into the book beautifully. You’ll learn things about CF you may have never heard before, and you’ll be cheering on those scientists.

Trivedi recently became Senior Science Editor at National Geographic. When Trivedi began Breath of Salt in 2012 she was familiar with a drug that would only help 4 percent of the CF population, she realized how quickly science was moving in the field of CF, and decided to write about the history of CF, and all who had a role in getting us to where we are today (2022). No one in Trivedi’s family has CF, but we certainly consider her family. Her book teaches us not only about the beginning of the CF Foundation, but also about the parents who built it. Our stories (Laura Bonnell and Beth Vanstone) are very similar in many respects. This podcast features Laura Bonnell and Beth Vanstone (two CF mom’s). Vanstone lives in Canada where she has worked tirelessly to make CF drugs more accessible not only to her daughter Madi, but to other CF families. She is a huge advocate and friend of The Bonnell Foundation.

Bijal’s book: Breath from Salt: https://www.amazon.com/Breath-Salt-Patients-Families-Medicine/dp/1948836378
For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
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 Mom and Plus Size QVC model Rebekah Farley talks CF

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 voice over artist and published author. In 6 short years Rebekah has already used her voice to educate, fundraise and get involved in community service. She is currently active, as well as being one of the two founding members on her local hospital’s pediatric cystic fibrosis parent advisory board.
Rebekah Farley on Instagram: https://www.instagram.com/rebekah_plusmodel/
For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
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/

You can watch the video podcast here with Rebekah Farley and Laura Bonnell

Gunnar Esiason

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 about CF. Gunnar is the son of NFL great, Boomer Esiason, and now has a son of his own. He hasn’t slowed down at all. He is getting his second masters degree in public health while helping his wife Darcy care for their newborn son, Kasper. I am excited for you to hear about how he’s doing as he talked to use from his home in New Hampshire.

The Boomer Esiason Foundation Website: https://www.esiason.org/
Gunnar’s Website: https://www.gunnaresiason.com/
For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
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/

The future of CF pulmonologists (thanks to a BF grant)

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 us, the need is critical. Dr. Carey Lumeng, a professor of Pediatrics and the Interim Director of the division of pulmonary medicine and he sees patients at C.S. Mott Children’s hospital which is U of Michigan. Dr. Thomas Saba is both an assistant director of the Pediatric residency program and the Program Director of the Pediatric Pulmonology Fellowship coordinator. We invite you to donate to the Bonnell Foundation fellowship grant! Use the link below.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
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/

Brett Bowman and Mom Kim talk transplant, blindness and legacy

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, (whether or not your child has cystic fibrosis)…that your child should precede you in death. I don’t know how Kim got out of bed after Blake died, but she did. Not too long after, 4 years later, Brett needed a double lung transplant. How terrified Kim and Brian must have been. They now have to deal with the possibility their only living son could now die from a transplant. Fortunately, he didn’t, but it wasn’t’ smooth sailing. Brett came out of the transplant with beautiful new lungs, but lost his eyesight due to bacteria in the lungs. There was no time for Kim and Brian to rest emotional. Today Brett is rising up from the cruelty of this disease. He just got his leader dog…and so his new chapter begins.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
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/

Dr. Heather Walter talks about CF and Post Traumatic Stress

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 organizational communication and conflict, with a focus on health organizations and post-trauma health communication. She has published many journal articles and chapters on this topic, including several case studies designed to show the applied nature of communication research. She has a textbook in press and available in January 2022, titled “Casing Conflict Communication.” She currently serves as a faculty fellow for the Center for Conflict Management and works regularly with local community organizations and hospitals to improve communication skills and patient advocacy.

Video promoting the podcast: https://youtu.be/RoXurtSA2R8
Dr. Heather Walter Bio: https://www.uakron.edu/schlcomm2/faculty/bio-detail.dot?u=hlrosen
For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
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/

A transplant in the pandemic (for her son), Joan Galinkin ‘s story

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 connect with other CF Mom’s how have kids who received a lung transplant. 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 connect with other CF Mom’s how have kids who received a lung transplant. You can reach out to her at the email address below.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
To contact Joan Galinkin: jgalinkiin@gmail.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/

Steven Strickland, new lease on life!

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 Apple Store in Troy, MI and owner of his own company, Giant Helmet. Steven talks about the tough decisions he continues to make about transplant, mental health and his future. Stricklands company will donate proceeds to our Foundation and the Rock CF Foundation. Strickland mentioned this in his podcast but made the official announcement after this podcast was released. The hockey sticks he cells will help pay for the Giant Helmets he donates to teams like the Detroit Lions, Detroit Red Wings and Detroit Tigers. Check out his website to see how you can purchase one (and remember, donations will go to his two CF charities of choice)!

For more on Steven’s Giant Helmets, you can check out https://gianthelmet.com/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
To reach Lorna McEwan: https://www.facebook.com/lorna.l.mcewan
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/

Mums to Moms 2

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 will inspire you, and lift you up. She’s an incredible woman sharing her journey with us in the Mums to Moms podcast(Beth Vanstone, Laura Bonnell and Patti Tweed). It’s all about empowerment!

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
To reach Lorna McEwan: https://www.facebook.com/lorna.l.mcewan
The original music in this podcast is performed by Marc Cotterell, who happens to have Cystic Fibrosis. You can find him on Instagram here: https://www.instagram.com/m4rccotterill/
Or here on twitter: https://twitter.com/MarcCotterill
Or on YouTube here: https://studio.youtube.com/channel/UCxPDZTZt3hBuyomkxLFttNw/videos/upload?filter=%5B%5D&sort=%7B%22columnType%22%3A%22date%22%2C%22sortOrder%22%3A%22DESCENDING%22%7D
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Nutrition with Michele Ciancimino, not mainstream high fat diet!

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 from the heart. “My personalized approach begins and stays focused on you and what your body needs to run better. I walk alongside you as you transform your body, adjusting your plan as needed to make sure you are supported in achieving the results you desire.” On the personal side, Michele’s passions are ballet barre workouts, cooking healthy meals for friends and family, and playing with her rescue dogs.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Connect with Michele: https://goodnessgirl.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/

Kate Bryan of 1 Girl Revolution

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-Nominated short documentary “The Girl Inside” about incarcerated women. You can also her the incarcerated women on Kate’s podcast series. Go Kate!

1 Girl Revolution Website and Podcast: https://1girlrevolution.com/
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/

CF Dad’s have a lot to say!

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 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 we will connect you!

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
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/

Canadian Author Chris MacLeod (who has CF)

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 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 Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
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/

Mums to Moms: talking CF from Canada to the U.S.

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’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 shoot us an email: thebonnellfoundation@gmail.com Thank you.

For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/
Vertex Pharma – the science of possibility. https://www.vrtx.com
Sponsored by https://www.fordfund.org/globalcaringmonth
The original music in this podcast is performed by Marc Cotterell, who happens to have Cystic Fibrosis. You can find him on Instagram here: https://www.instagram.com/m4rccotterill/
Or here on twitter: https://twitter.com/MarcCotterill
Or on YouTube here: https://studio.youtube.com/channel/UCxPDZTZt3hBuyomkxLFttNw/videos/upload?filter=%5B%5D&sort=%7B%22columnType%22%3A%22date%22%2C%22sortOrder%22%3A%22DESCENDING%22%7D
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Neal Smith

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 and Ceo David Shockley was show parents, patients and doctors the vest. Shockley is a wonderful, down to earth person who is commitment to making life better for people with a disease or condition. IBC also makes cools things like ozone generators for the space shuttle. They make heart pumps, surgical tubing and more. In this podcast we are delighted to tell you that you’ll hear from Neal Smith, Director of Marketing and Education for International Biophysics. Thank you.

International Biophysics Website: https://biophysicscorp.com/
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/

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/

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

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