Living With Cystic Fibrosis

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 color is slowly changing. Many people of color are...

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 Hospital in Elmhurst, New York, and her pediatric pu...

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 r...

  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. ...

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 the...

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 a...

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 lon...

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...

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 lif...

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....

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 yea...

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...

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 pr...

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 fibrosi...

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...

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 re...

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 compan...

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...

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 a...

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...

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 starte...

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...

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...

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, patient...

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....