Living With Cystic Fibrosis

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 o

 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 als

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.comViatris:  https://www.viatris.com/enThe original music in this podcast is performed by Kevin Allan, who happens to have Cysti

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.comViatris:   https://www.viatris.com/enThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts: https://jagindetroit.com/

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 C

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.phpBacteriophages as a therapy for Cystic Fibrosis.  May 29, 2018 http://www.thoracic.org/about/ats-podcasts/bacteriophages-as-a-therapy-for-cystic-fibrosis.phphttps://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__6Y6hG0wjwlfchABa9o

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 int

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.  H

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.Links:Rebekah blog: www.jauntywithasideofdoubt.comRebekah 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.comSponsored by  https://www.fordfund.org/globalcaringmonth  The original music in this podcast is perfor

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.comSponsored by  https://www.fordfund.org/globalcaringmonth  The or

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 coordinatorWe 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.comSponsored by  https://www.fordfund.org/globalcaringmonth  The o

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 lungsThere was no time for Kim and Brian to rest emotional. Today Brett is rising up from the cruelty of this disease.  He just got

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 focuson health organizations and post-trauma health communication. She has published many journal articlesand chapters on this topic, including several case studies designed to show the applied nature ofcommunication research. She has a textbook in press and available in January 2022, titled “CasingConflict Communication.” She currently serves as a faculty fellow for the Center for ConflictManagement and works regularly with local community organizations and hospitals to improvecommunication skills and patient advocacy.Video promoting the podcast: https://youtu.be/RoXurtSA2R8Dr. Heather Walter Bio: https://www.uakron.edu/schlco

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.comSponsored by  https://www.fordfund.org/globalcaringmonth  To contact Joan Galinkin:  jgalinkiin@gmail.comThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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 information on The Bonnell

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.comSponsored by  https://www.fordfund.org/globalcaringmonth  To reach Lorna McEwan: https://www.facebook.com/lorna.l.mcewanThe 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 twitt

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.comThe original music in this podcast is performed by Kevin Allan,

How I met Kate Bryan, the 1 Girl Revolution.    A mutual friend told Kate about me and The Bonnell Foundation.  I was still a news reporter at WWJ, and working on my Foundation.  Kate came to my house to record the podcast and we hit it off!  Kate has terrific energy and is doing amazing stories on her 1 Girl Revolution podcasts. Kate has an Emmy-Nominated short documentary “The Girl Inside” about incarcerated women.  You can also her the incarcerated women on Kate's podcast series.  Go Kate!    1 Girl Revolution Website and Podcast: https://1girlrevolution.com/For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

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.comThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusicThis podcast was

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.comSponsored 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.comThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: https://www.facebook.com/KevinAllanMusicThis podcast was pro