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/

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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 thanks to the help of Dr. Nasr who travels back to Egypt once a year.  Dr. Nasr arranged for sweat test machines so that doctors 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/

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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 children were suffering from symptoms of cystic fibrosis—but going undiagnosed. At the time, some Egyptian physicians and the Ministry of Health believed CF didn’t exist in their population. But Dr. Nasr knew differently.

Through years of tireless advocacy and education, she helped shift that narrative. By 2007, her efforts led to the diagnosis of more than 1,000 patients—proving that CF was, in fact, affecting lives in Egypt.

Dr. Nasr shares with us:

The hurdles she faced in bringing awareness and testing to Egypt

The ongoing struggles patients there face due to lack of access to lifesaving medications

Why government recognition of CF is essential for insurance coverage and access to modulator therapies

Her vision for a future where all CF patients, regardless of geography, receive the care they need

Dr. Nasr’s work is a testament to the power of persistence, compassion, and global advocacy. This is a must-listen episode for anyone passionate about health equity and the future of cystic fibrosis care.

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/

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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 basic care, such as getting your hands on digestive enzymes for example, it 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/

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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 Clinic. Dr. Nasr has helped diagnose 1,000 CF patients.  She hopes to diagnose 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/

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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.

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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://thebonnellfoundation.org

Email us at: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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.

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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 thanks to Ryan Gough for getting us together.

We had candid conversations in this podcast. It is from the perspective of three people with CF (Emily Schaller; 38 years old, Brian Callanan;44 years old; and Jerry Cahill, 63 years old) along with two CF Moms (myself and Siri) and Lee Becker, Boomer Esiasons' best friend, CF advocate and partner in the Boomer Esiason Foundation.  He is the glue and reality check of our group.

Siri comes to us from California, Lee and Jerry from their respective homes in NYC, Brian from Florida, Emily and Laura from Detroit.  The one person who couldn't be on this podcast is the "smartest one among us" said Callanan -- Emily Kramer Golinkoff founder of Emily's Entourage.

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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 trips, events, school, college days and taken it in stride. They have skied with a picc line, been hospitalized in England with no family to care for her, but friends rallied. Emily's daily life is often disrupted by pain from the disease, but she soldiers on. They have been through hell, and now, the pandemic. Their truth, and wise words are in this podcast.

I realized parents needed both emotional and financial support.  There were a lot of much needed fundraising being done by foundations for research, but in 1994, not much for parents.  That's when I decided it was important to start my Foundation.  It wasn't until 2010 that I had the time to do it.  The girls were always in the hospital (usually Emily) and I was working in the field of my dreams: radio news reporter. 

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: [email protected]

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y