Living With Cystic Fibrosis

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 aware...

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...

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...

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 infor...

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...

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 inf...

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: ht...

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) star...

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 thei...

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 challe...

Two 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...

Dr. 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 t...

Podcast Episode: Dr. Samya Nasr – Changing the CF Landscape in Egypt and Beyond In this powerful episode, we’re joined by Dr. Samya Nasr, Director of the Cystic Fibrosis Clinic at the University of Michigan and Professor of Pediatrics, whose work has reshaped how CF is recognized and treated across borders. Back in 1997, Dr. Nasr began raising a red flag in her home country of Egypt, where many ch...

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.  The medications they do have access to aren't like anything we have in the United States.  Even basi...

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 (f...

Beth 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.  Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://...

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 t...

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...

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 trip...

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...

Resources: Translate Bio Website The Bonnell Foundation Email The Bonnell Foundation Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featu...

Resources: The Bonnell Foundation Email The Bonnell Foundation Michigan Department of Health and Human Services     Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.yout...

For more information please visit the following sites: https://thebonnellfoundation.org http://www.childrenshospital.org/directory/physicians/u/ahmet-uluer https://www.facebook.com/thebonnellfoundation/ Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us a...

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 Col...

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...