Living With Cystic Fibrosis

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.comSponsored 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/MarcCotterillOr on YouTube her

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

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.comThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcast

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.comReach and read about Andy Lipman: https://www.cfwarriorproject.orgAndy's family foundation: https://www.wishforwendy.orgThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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.comTo 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 Face

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.comTo 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/For more information on Ashley's

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.comThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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 Bon

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.comThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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.comThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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.comThe 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/KevinAllanMusicThis podcast was produ

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.comThe original music in this podcast is performed

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.orgVertex Pharma - the science of possibility.  https://www.vrtx.comThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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/KevinAllanMusicThis podcast

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.comThe original music in this podcast is performed by Kevin Allan, who happens to have Cys

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.comThe original music in this podcast is performe

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.comThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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.

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. 

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.