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/

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! 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/

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 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/

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 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/

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/

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/

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/

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/

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/

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 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/

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 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/

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/

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/

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/

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/

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

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/

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/

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/

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/

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/