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Podcasts are here! Listen to the Living With Cystic Fibrosis podcast on iTunes, Spotify, Google Play, or your favorite podcast source.

CF in Thailand: one on one with Dr. Haruthai Kamalaporn

Dr. Harutai Kamalaporn sees 12 of the 30 patients diagnosed with CF in Thailand. The challenges she faces are: lack of medications, equipment and sweat chloride tests at all three hospitals. Dr. Kamalaporn continues to advocate for more testing machines. Some countries, such as India and Bangladesh have developed their own indigenous method for sweat testing. This is according to information put out in part by the Official Journal of Asian Pediatric Society in the Pediatric Respirology and Critical Care Magazine.

Dr. Harutai Kamalaporn is the Pediatric pulmonologist. She received a medical degree and certificate in Pediatric Pulmonology from Mahidol University in Bangkok in 2004. Dr. Kamalaporn completed her clinical and research fellowship training at the Hospital for Sick Children (SickKids), University of Toronto, Canada in 2008. Her research mentors were Professor Sharon Dell who is an expert in Asthma and Professor Allan Coates who is an expert in Aerosol Medicine. Dr. Kamalaporn is now an Associate Professor, Director of Pediatric Pulmonary Fellowship Training Program at the Faculty of Medicine Ramathibodi Hospital, Mahidol University. Her area of interest includes CF, asthma, pediatric respiratory care and chronic lung disease of the infancy. She has participated in the recent publication of “CF in Asia”.

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
The Bonnell Foundation website: https://thebonnellfoundation.org/audio-podcasts/
The Bonnell Foundation email: thebonnellfoundation@gmail.com

GPS Vertex program: explained

If you are taking one of Vertex’s medications, you may be aware that the GPS program at Vertex recently made changes to its co-pay assistance program. In September of 2022, a patient advocate at Vertex reached out to The Bonnell Foundation. The reason for the Zoom meeting was to explain how the co-pay assistance program would change in 2023. It’s my understanding (Laura Bonnell) that Vertex reached out to many CF nonprofits so that in addition to communicating directly with enrolled patients, foundations like mine would also help spread the word and know where to direct people if they had any questions.

Vertex has communicated that they oppose any programs or initiatives that increase costs for patients. This means for example, an insurance company taking funds that were provided to patients as part of the GPS program.

Co-pay accumulators and maximizers work this way. Let me explain: You take your assistance or coupon from your pharma and give it your pharmacy. The insurance company gets those funds, but they don’t go toward your out-of-pocket responsibility. So, the insurance company actually gets paid twice. In Michigan, advocates like myself are trying to change this law so that co-pay assistance gives credit to the consumer.

You may have seen press releases or posts on social media from other foundations or patients regarding these changes, some of which express concern that people taking Vertex medicines will literally pay the price. Vertex has assured their enrolled patients that no one will go without their medication.

I’m here with Jenna Harrington- who is the Head of Vertex’s Guidance and Patient Support Program – to help us understand more about these changes, who is impacted, and why these changes were made.

I also have another guest with us- Amit Sachdev- who is the Chief Patient Officer at Vertex. These changes are being made due to restrictive insurance practices and ultimately, we need a systemic solution for people living with chronic diseases. He will be talking about the policy aspect and what we can do to get more involved to support policies that are beneficial to the CF community.

To be transparent, Vertex is a sponsor of this podcast and our Night of Hope Event. My foundation remains objective in getting out information and will call out any person or partner if we believe they are harming or not addressing our CF community properly.

To reach GPS with any questions: 1-877-752-5933, press option 2 when calling. Vertex GPS™: Guidance and Patient Support is committed to helping all enrolled patients maintain access to their Vertex medicine through the January 2023 Co-pay Assistance Program changes.

To help in the fight to make healthcare fair get in the fight with The Bonnell Foundation. Help us fix what is wrong with the co-pay accumulator in Michigan. To help in Michigan or elsewhere go to: Allcopayscount.org

A Federal solution is also needed read up on H.R 5801 The HELP Copays Act bill.

The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en

Cure Found MSU – pre-medical students changing the World

19 year old Atef Choudhury and 18 year old Naim Mashni are both sophomores at MSU, and they have found their voice. Atef has a nephew with CF and that is what made him want to start to raise awareness on campus. And so Cure Found MSU was born. In their young lives this two men have accolades to long to list here, just know they are smart and motivated to change the world. They work closely with the CF Clinic at MSU run by Dr. Ryan Thomas. Part of what they do is to offer their 70 members top tier opportunities in the field. So along with resume building, they also fundraise. In 2023 they will be doing some fundraising for The Bonnell Foundation and the CF Foundation. You’ll be inspired to do more yourself after you hear everything Atef and Naim are up to. Our hats off to them for their enthusiasm, sense of community and for all the ways I know they’re going to change the world for the better.

The Bonnell Foundation: https://thebonnellfoundation.org
Email us: thebonnellfoundation@gmail.com
CureFound MSU: https://curefoundmsu.org

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en

Dental Health: An Informative, Fun Discussion!

Did you know your child should visit a pediatric dentist? Did you know that people with CF generally have better dental health than the rest of the general population? Are you familiar with a toothbrush that connects to your phone and will let you know if you’re brushing your teeth correctly? Did you know if your CF child has reflux (very common in CF kids) this can impact their dental health.

In this podcast I talk with Holli Seabury with the Delta Dental Foundation, she has a wealth of information about dental care. No one likes to go to the dentist, but Holli gives us so much information that you will find yourself wanting to learn more! Did you know if your child has CF (or a chronic illness) they can get 4 teeth cleanings a year, even if your employe/insurance says they don’t cover it. Holli will explain how this works. Hollie Seabury, EdD, is the executive director of the Delta Dental Foundation. She is committed to oral health equity and advancing dental science through education and research.

The Bonnell Foundation website: https://thebonnellfoundation.org
Email us: thebonnellfoundation@gmail.com

Colgate Hum toothbrush on avg. is $14.00. There is also a Colgate Hun toothbrush for adults. Its about $68.00 There at Target, Here are some choices on Amazon, or just search on google. https://www.amazon.com/s?k=colgate+hum&crid=3CZRRCF44509B&sprefix=colgate+hum%2Caps%2C90&ref=nb_sb_noss_1

Delta Dental Website: https://www.deltadental.foundation/about-delta-dental-foundation
Delta Dental All Smiles Shine App: https://www.deltadental.foundation/all-smiles-shine-app
Delta Dental Foundation FB: https://www.facebook.com/DeltaDentalFoundation
Linkedin: https://www.linkedin.com/company/delta-dental-foundation/
Twitter: https://twitter.com/DDFGivesBack

CF Vests Worldwide

Not everyone with CF enjoys the same level of care. Tragically it depends where you live. Some countries don’t even recognize the disease. If a country doesn’t recognize CF, that means medications aren’t available and there is no health insurance coverage. All of us are working together to change the world for people who have CF.
Doing his part is Rod Spadinger who founded CF Vests Worldwide a couple of years ago. Rod has CF and is alive thanks to a double lung transplant. Rod got an email from a girl in Chile who needed a vest, and the idea was born from that first email. Rod recently brought on his Vice President Josh Bauder. Josh’s daughter Evangeleen has CF.  Josh and his wife run a children’s home in Chiang Mai, Thailand.  Josh, an American is married to Chitty, who is Thai. The couple has witnessed first-hand the struggles of raising a child in Thailand, the care and medications are not the same.

The Bonnell Foundation website: https://thebonnellfoundation.org 
The Bonnell Foundation email: thebonnellfoundation@gmail.com
CF Vests Worldwide Website: https://www.cfvww.org/
CF Vests Worldwide Facebook: https://www.facebook.com/CFVestsWorldwide
CF Vest Worldwide YouTube: https://www.youtube.com/channel/UCdLSDUZyIduG_LI8OIwWJXw

All things Lung Transplant with Jen Weber

Attorney Jen Weber is 49 years old and waiting to have her third lung transplant. Weber lived in Indiana until this third transplant, when she had to move to Durham, North Carolina to be near her transplant hospital: Duke University Health. Weber also started a non-profit five years ago that meets inpatient and outpatient needs ( for example: pajama pants, slippers, cell phone chargers). Weber worked for the Indiana Supreme Court for 16 years (in personal and operations) while going through her first transplant. Weber is trying to help us understand the emotional and financial toll a transplant can take on a person, and their family.

As she waits for her third transplant Weber is in need of a living kidney donor. Anyone interested in getting tested can call: 919.613.777.

Something we did not talk about in the podcast is her love of music! Weber is a cellist! She still plays with the Carmel Symphony.

Duke kidney donation application: https://redcap.duke.edu/redcap/surveys/?s=9EHPAAPMFM
Donate to C.O.T.A for Jen’s transplant expenses: https://cota.org/campaigns/COTAforJenWarrior
Comfort Finders Foundation: https://comfort-finders.org

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
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/

A Kid Again Adventures

We’re talking today with the founder of A Kid Again, Kathy Derr. It is a nonprofit organization that plans family adventures in many states across the U.S.  and the adventures are free to families.

Kathy Derr and two of her friends started the nonprofit camp 25 years ago. Kathy’s son Christopher died from an inoperable brain tumor.  She started A Kid Again in her son’s honor.

Kirsten Kulik is A Kid Again mom.  She has three kids, and her son Chase has cystic fibrosis.  Kirsten tells us what the camp meant to her, and the family.

Kathy Derr is co-founder and current Director of Family Engagement for A Kid Again, a national nonprofit that provides year-round, cost-free, fun-filled Adventures for kids with life-threatening conditions and their families. Kathy and two friends started the nonprofit more than 25 years ago in memory of Kathy’s son Christopher after he passed away from an inoperable brain tumor. The spark for A Kid Again was inspired by the kindness of Kathy’s family and friends who organized outings for her family during her son’s battle with cancer. A Kid Again is the only childhood disease nonprofit that focuses on group recreation and support for the entire family, not just the child with the illness. Today, A Kid Again serves more than 10,000 families nationwide.

Kirsten Kulik is an A Kid Again mom. She and her husband Jody are parents to Jacob, 19, Chase, 16, and Skye, 8. Her son Chase was diagnosed with Cystic Fibrosis in September 2016 and the family has been part of A Kid Again since 2019. In addition, Susan also works as Vice President and General Manager for FAST International, Inc. and enjoys volunteering with A Kid Again, Cystic Fibrosis Foundation, and the Electrocoat Association.  As a pastime, Kirsten enjoys watching her two sons drag race which they have been doing since they were 8 years old.

https://thebonnellfoundation.org

A Kid Again contacts: 

https://www.linkedin.com/company/a-kid-again/

https://twitter.com/akidagain

https://www.instagram.com/a_kid_again/

https://akidagain.org/

https://www.facebook.com/akidagain/ 

Our first CF Podcast in Spanish

Dr. Jennifer Shedden of Genentech reached out to the Bonnell Foundation to raise awareness about cystic fibrosis in the Hispanic community, and the non-CF community. We started the CF Familia page!
We recently did a podcast together that focused on our CF Familia page. This page on our website focuses on the challenges the Hispanic community runs into before and after diagnosis In this podcast, Dr. Jennifer Sheddan answers all the questions in Spanish. Enjoy.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
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/

Costly transplants: don’t go broke. More help…

The Children’s Organ Transplant Association (C.O.T.A), helps people waiting for transplants, fund the procedure and everything that surrounds it.

Laura Bonnell learned about COTA when her nephews needed a bone marrow transplant (not CF related).  When someone needs a transplant, they usually living in their home state and getting a transplant in another state or city.  They have to be close to their transplant hospital.  They might be there for four months. This means there is an additional rent cost, transportation costs, spouse or a parent staying with you, etc. Rick Lofgren joins us today to talk about C.O.T.A.  As you know, The Bonnell Foundation offers lung transplant grants. But even our grants don’t cover all the costs of a transplant, and health insurance certainly does not cover all the expenses.

C.O.T.A, as you’re about to hear, is a non profit, so family’s will not be taxed on the money raised (which is true of Go Fund Me fundraisers).

Social media for C.O.T.A
FB: https://www.facebook.com/COTAFans/
Website: https://cota.org
Twitter: https://twitter.com/COTA_ORG
Linkedin: https://www.linkedin.com/company/cota_org/

Instagram: https://www.instagram.com/cota_org/
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
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 and Colon Cancer

CF and Colon cancer, the risks are higher than you may be aware. Anna Payne is 35 years old and was diagnosed with stage 4 colon cancer a year ago.Anna is advocating to get colon cancer screening down to age 25 for people with CF. She’s in the fight of her life, and she’s fighting for others. I hope this podcast reaches CF families that need to hear this critical message, and that it makes you an advocate.

Anna’s Foundation: http://bccfa.org
Anna’s email: buckscountyCfalliance@gmail.com
Anna’s Public Service Announcement: https://mail.google.com/mail/u/0/#inbox/KtbxLxGvbxbndnpNLnVrlGQpTHbCpnHxhg?projector=1
CFRI’s colon links: : https://www.cfri.org/acolonscopycansaveyourlife/
Cystic Fibrosis Foundation information page: https://www.cff.org/managing-cf/about-colorectal-cancer

Andrea and Alyson Hoffman

Andrea Hoffman and Alyson are twins born with CF. Andrea is 30 seconds older than her sister. The women attend Ohio Northern University. As you will hear, they are over achievers!
This is the twin’s Senior year of college. Andrea plans to attend law school after she graduates. Andrea advocates on the state and federal level. And she sits on the Rare Disease Advisory Council (RDAC) in Ohio (the RDAC is something Michigan has yet to pass). Andrea received her second Bonnell Foundation Education scholarship this year, and will speak at the Foundations September 30th gala along with her sister Alyson.
Alyson also attends Ohio Northern; received a scholarship from the bonnell foundation. Alyson has a triple major, and also a minor degree. Alyson says she enjoys in person sharing about CF, rather than sharing her story on social media. She does a lot of public speaking about CF. As you hear these women speak you will be inspired by their energy and you’ll realize, they’re going to change the world in many ways.
Both talk about staying healthy during a pandemic, doing treatments at college and much more. Lets get this conversation started!

To connect with the Hoffman sisters, you can send them an email.
Andrea: a-hoffman.4@onu.edu
Alyson: a-hoffman.7@onu.edu

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
To meet Wes: https://www.facebook.com/wes.hawkins.9
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
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 Jennifer Shedden

Dr. Jennifer Shedden reached out to the Bonnell Foundation to see if we were interested in raising awareness about cystic fibrosis in the Hispanic community, and the non CF community. The Bonnell Foundation said “YES”.
In this podcast we talk about all the barriers that people of color face when trying to get diagnosed, and we focus on challenges the Hispanic community. We now have a page on our website called CF Familia that is in both English and Spanish. There is information about CF, offers resources and CF stories from the Hispanic community. Lets dive right into the subject now.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Jennifer’s email: Jennifer.Shedden@ashfieldhealthcare.com
Thanks to our sponsors:
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
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 – www.jagindetroit.com

Wes Hawkins

As we wrap up pride month, we have a lovely story to tell you. It’s Wes Hawkins story. All of us at The Bonnell Foundation know there are many people with CF that are in the LGBTQ PLUS community. Host Laura Bonnell saw a post by Wes Hawkins on FB. He shared his CF journey and his coming out story. The Bonnell Foundation wanted to share his story on our podcast. Wes is 30 years old. We start the podcast talking about his CF health, and then he tells us about when and why he decided to speak his truth. Wes lives in Oklahoma; he has two older brothers who do not have CF. He grew up in a religious family. His Dad, in the early days, raced greyhounds and he was a young boy surrounded by hundreds of dogs. Wes now lives in his own house on his mom’s ranch where he is surrounded by 70 cattle, a horse and miniature pony.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
To meet Wes: https://www.facebook.com/wes.hawkins.9
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Thanks to our sponsors:
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
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/

My Mom, Lois Teicher and I talk all things CF!

My Mom, Lois Teicher is a famous sculptor in the U.S. and a strong cystic fibrosis supporter. In this podcast we talk about how grandparents feel when they hear the CF diagnosis. I realized that I was always focused on how our family was doing, and never really asked my Mom how the diagnosis of Molly and Emily impacted her. So we talked all things CF in this podcast. You can check out my Mom’s incredible work using the link below. My Mom and Dad divorced before my daughters were born. My Mom and her partner Natalie have supported our daughters all these years.

Lois Teicher Website: https://loisteichersculptor.com/

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/

Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/

Thanks to our sponsors:

Genentech: https://www.gene.com/

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

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/

Laura Varon Brown

Former Detroit News reporter, Laura Varon Brown talks to The Bonnell Foundation about losing her Detroit News photojournalist husband, Jim, too cystic fibrosis.
In this podcast Laura Varon Brown talks about his life, legacy and they daughter Molly they had together. The couple married in 1985, before the cystic fibrosis gene that causes cystic fibrosis was discovered by scientists in the genome project. Jim sadly died from the disease just 5 years later, 13 weeks after their daughter Molly was born.
Laura Veron Brown talks to Host Laura Bonnell about Jim’s last work trip to the West Bank. Jim was there to take photographs of the armed prising of Palestinians against the Israeli occupation of the West Bank and Gaza Strip. Laura talks about being married to someone with CF, and about all the joys it brought to her life.
Varon-Brown also talks about how she moved forward, remarried and had a second daughter, Emma.
The two Laura’s have been friends for 10 years and talk about the disease that brought them together.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/

Thanks to our sponsors:
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
Laura Varon Brown: https://www.gildasclubdetroit.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/

Amy Gaviglio

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 not diagnosed at birth despite newborn screen because their rare genetic mutation may not be one of the mutations tested in the panel. The Hispanic community has certainly found this to be true. The Bonnell Foundation debuted a page for the Hispanic community. There are story’s, videos and a description about CF in both Spanish and English on our website.
Here to explain to us, in terms we can understand is Geneticist Amy Gaviglio. She is a certified genetic counselor and public health genetics consultant who has been working in the Newborn Screening arena for the past 14 years. She is currently a consultant with the Centers for Disease Control and Prevention, Association of Public Health Laboratories (APHL), and Expecting Health, amongst others.
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Please visit for health equity: https://noaacf.org/health-equity/terry-wrights-law/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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. Johanna Zea-Hernandez

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 pulmonary fellowship at The Children’s Hospital at Montefiore in Bronx, New York. Dr. Zea-Hernandez’s clinical interests include asthma, cystic fibrosis and chronic lung disease.
We talk about the many challenges for the Hispanic population to get properly diagnosed.  Often the Hispanic community is not diagnosed by newborn screening (only the most popular 60 panels are listed, and there are 2,000 CF mutations).  Pediatricians don’t always correctly diagnose CF in the Hispanic Community.  The barriers facing the Hispanic community can be socio economic, language barriers and other factors you’ll hear about in this podcast.
Please check out the Bonnell Foundations Hispanic page.  Go to our website and click on Living with CF, you’ll see the drop down and can click on the CF Familia page.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/

Thanks to our sponsors:
Vertex Pharma – the science of possibility.  https://www.vrtx.com

Viatris:  https://www.viatris.com/en
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 in Canada with Beth VanStone

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 regulations that would have had the unintended side effect of Trikafta not being available there.
Many Americans assume that Canadian health care coverage is better. Beth gives us an honest look at the shortcomings of the healthcare system in Canada.
Laura and Beth talk about the need for an international approval process for new drugs and treatments for rare diseases, so patients don’t have to wait for each country to approve every treatment. The two talk about how a collaborative, patient-centered discussion would benefit so many. The discussion includes the topic of Insurance companies and Pharma. Companies are often vilified, but it’s going to take all stakeholders to affect change.

Thanks to our sponsor:
Viatris: https://www.viatris.com/en
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/

Lost Women of Science

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. It was about science pioneer, Dr. Dorothy Anderson. I didn’t know anything about her, how could I not know anything about her? .Thanks to Dr. Anderson, CF was diagnosed. Next, I read a description about the podcast and listened to every episode about Dr. Anderson, over and over again. Host and Executive producer Katie Hafner does a wonderful job telling the story with her voice, and the voice of others. Hafners co-executive producer, Amy Scharf is with us today to talk about all that they uncovered about Dr. Anderson’s life.

Amy is a bioethicist at Memorial Sloan Kettering Cancer Center in New York City. Amy is also the Chair of Board of Children’s Aid, a non-profit that provides comprehensive social, educational, and health services to children in NYC’s underserved communities and an Advisory Board member of the Johns Hopkins University Berman Institute of Bioethics. We’re honored to talk with her.

Lost Women of Science Website: https://lostwomenofscience.org/
Lost Women of Science Podcast Season 1: https://lostwomenofscience.org/season-1
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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/

Musician, Influencer, and Business Architect Marc Cotterill

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 them change and improve.
When I started following Marc on social media I was hooked on his creative videos. He creates videos and music for clients and for his own passion projects, He uses his musical and creative talents to raise awareness about all things CF.

Marc’s Instagram: https://www.instagram.com/m4rccotterill/
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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 pioneer, program coordinator, Dee Aquazzino

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 about her hope for the future. Hint: she sees a cure for CF in the future.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our Sponsors Vertex and Viatris.
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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/

Kateryna’s story. She is a CF Mom who recently fled Ukraine.

Kateryna lived in Lviv, Ukraine. When they heard bombing outside their home at 5:00am they decided it was time to leave their war torn country. They are now refugee’s in Germany, living with friends. Kateryna, and her husband Andrew continue to care for their 4 year old daughter who has CF. In this video podcast you can see the worry, and tears because of all they have endured.

Ukraine refugee and CF Mom Kateryna Koval’s story

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 long line of traffic to escape. They were able to take Anna’s CF vest and medications with them (unlike some of the other 900 CF families in Ukraine who had to walk to flee). They’re now refugees in Germany. You’ll be moved to tears by her story. She’s mentally overwhelmed and worried about their future. Is Ukraine still their home, or did they leave it forever? She doesn’t know the answer. Most importantly Anna is being seen by a CF doctor in Germany. Kateryna was worried her daughter might not get the care she needed, or be able to get refills on CF medications.
Rod Spadinger is also featured on this podcast. His CF Vests for Life Foundation does great work by getting CF Vests to people around the world.

CF Vests for Life Website: https://cfvests4life.org/
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.com
Viatris: https://www.viatris.com/en
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. Ryan Thomas

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 clinic director at MSU. We talked to Dr. Thomas about what research is going on at the clinic, and so much more.

The Cystic Fibrosis Pulmonary Microbiome. October 2020 https://www.thoracic.org/about/ats-podcasts/the-cystic-fibrosis-pulmonary-microbiome.php
Bacteriophages as a therapy for Cystic Fibrosis. May 29, 2018 http://www.thoracic.org/about/ats-podcasts/bacteriophages-as-a-therapy-for-cystic-fibrosis.php
https://msutoday.msu.edu/news/2021/no-more-mucus-trikafta?utm_campaign=spartan_winter_22&utm_source=mag&utm_medium=print&utm_content=inspire&fbclid=IwAR3c7huDb761GuMZEmvOr0__6Y6hG0wjwlfchABa9oswZFJ6M_VtkwI2IZM
A restructuring of microbiome niche space is associated with Elexacaftor-Tezacaftor-Ivacaftor therapy in the cystic fibrosis lung https://www.sciencedirect.com/science/article/pii/S1569199321021317?via%3Dihub#sec0018
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/

Salt in My Soul

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 life, I am raising not one but two girls with cystic fibrosis. I didn’t think I could handle any of these books, but I bought them, and they sat on my shelf.

Serendipity happened to me, as it always does with CF related incidents. I was on a zoom webinar, got bored, and started looking at their Ads. One popped out at me: Lost Women of Science with NY Times reporter Katie Hafner. She did a four part series about Dr. Dorothy Anderson, who discovered in 1938, that CF existed. So for whatever reason, it seemed time to start reading all these books I had — with my girls at 27 and 24 years old, it was time to delve into everything CF.

At this time Diane Shader Smith and Director, Will Battersby were debuting their film, Salt in my Soul. It was Mallory’s story on film. It featured her videos, writings, her story. I didn’t know what to expect, but after watching it I felt like Diane was my CF Mom Soulmate and I had to talk to her. That’s where our story begins.

In this podcast you’ll hear from Diane and Will. We talked about everything from Phage therapy that could have saved Mallory, to staying strong and pushing for more in the world of CF.

Will Battersby: @Battersby4Will
Diane Shader Smith: @dianeshadersmth
Film: @SaltInMySoulDoc
More on phage therapy: @YalePhage
Salt in My Soul Website: https://saltinmysouldoc.com/

Author Bijal Trivedi

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/

CF Mom and Plus Size QVC model Rebekah Farley talks CF

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 years Rebekah has already used her voice to educate, fundraise and get involved in community service. She is currently active, as well as being one of the two founding members on her local hospital’s pediatric cystic fibrosis parent advisory board.
Rebekah Farley on Instagram: https://www.instagram.com/rebekah_plusmodel/
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/

You can watch the video podcast here with Rebekah Farley and Laura Bonnell

Gunnar Esiason

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 (thanks to a BF grant)

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/

Brett Bowman and Mom Kim talk transplant, blindness and legacy

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/

The Living with Cystic Fibrosis podcast is honored to receive the 2021 MarCom Award for Marketing and Communications.

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