Living With Cystic Fibrosis

Please consider subscribing, rating and commenting on our podcast (Spotify). But you can hear our podcasts anywhere. Dr. John Schuen is the division Chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s hospital in Grand Rapids.  He is also the director of the CF care center.  We’re talking to Dr. Schuen to discuss all that they have going on for CF patients in Grand Rapids. And w...

Bernie Martin is a Writer, Creative Consultant and, most importantly, Mother of a CF Fighter. After 15 years working as a Copywriter and Creative Director in some of Ireland’s top advertising agencies, she started her own consultancy called The Salty Pen in 2018. This move was born out of a desire to have more flexibility around caring for her little lady with CF, who she describes as her muse, he...

Newborn Screening, do you know what it is, do you everything about it?  Did you know that people of color are less likely to be diagnosed by newborn screen because in most cases, states test for common mutations, or white mutations.  Newborn Screening is a public health program. This is when a dried blood spot is taken from your babies’ heel.  NBS is recognized as one of the largest and most succe...

Please consider subscribing and rating our podcast. It helps us to promote. Thank you. This is a follow-up podcast about the Healthwell Foundation. Thanks again to Alan Klein, the Chief Development Officer for answering all of our questions and being transparent. They help 90 different disease groups with funding (whatever is not covered by insurance).  The Bonnell Foundation will refer people to...

(Please consider subscribing and rating our podcast. It helps us to promote. Thank you.) Israel is at war. The emotional toll on families in Israel and Palestine is unimaginable. Israeli, 43 year old Nirit Maizel is trying to live her life as best she can while her country fights against Hamas.  She has cystic fibrosis, it's harder now to get medications and live any sort of a normal life.  Nirit...

51 year old Rory Tallon works with Cystic Fibrosis Ireland as a CF Patient Advocate as part of CFI’s member service team.  Rory has CF and was recently featured in our Living with cystic fibrosis podcast volunteering  for CF Ireland. In this podcast he’s talking about dating someone with CF.   It happens more than people may know and he tells us why as he explains his relationship with former girl...

Please subscribe, comment and rate our podcast on Spotify. (You can listen on any platform). Dr. Jennifer Taylor-Cousar is an amazing woman I can’t wait to meet in person one day.  She is a Board Certified Pediatric and adult pulmonologist at National Jewish Health in Colorado. She’s a rock star in the world of CF, and she’s doing incredible work raising awareness about systemic and individual bia...

Emily Lyons is not yet 40 years old (she's 37 years old) and is a multimillionaire. But her life has not been easy.  Her story is incredible, she's actually writing a book about it.  She dropped out of high school at 16 years old, worked as a nanny for a bit in Australia, modeled and now, well, she’s a multimillionaire running four companies. She was recently featured in Forbes magazine for her Fe...

Please subscribe, rate our podcast and comment. thank you. Marten De Vlieger do you know what he did or who he is?  I am excited to let you know. He is an adventure and sports athlete. He’s 41 years old with CF. Marin worked with HillRom, which is now Baxter, to make the Monarch Airway Clearance System. He worked on it for 10 years.  He still works with Baxter doing social media and some public sp...

Please consider subscribing, rating and commenting on our podcast (Spotify). But you can hear our podcasts anywhere. We’re traveling 9 hours by plane for this podcast to the lush green grass of Dublin, Ireland. You may want to pour yourself a Guiness for this podcast if you’re listening at home. If you’re walking while listening then just picture yourself surrounded by the pubs in Dublin or out in...

Asia Diaz is 27 years old and has CF. As an African American woman she was one of the many people diagnosis late in her life because some physicians believe incorrectly, that CF is a genetic disease that mainly impacts the white race.  For this reason Asia was diagnosis late in life. She tells her story of life long symptoms.  Her late diagnosis leaves her exhausted and sick. Asia wanted to have c...

Bean Corcoran, and Will Corcoran.  Mother and son. I met Bean Corcoran when we were doing a science and innovation campaign, and we became friends!  I learned a little bit about her son Will, who has CF.  Bean is very involved in the CF community.  She is the President of the CFF Connecticut Chapter and the Bridge of Hope Communications Director volunteer.  We did a podcast in the past about the B...

If you want to meet Jerry in person, I encourage you to attend our Night of Hope Gala on September 9th.  You’ll be able to talk with Jerry about anything that is on your heart.  You’ll be so inspired, like I am every single time I see him or talk with him.  If you’re not able to attend, you’ll still thoroughly enjoy this podcast as Jerry opens up about his long CF journey!  Sixty-six years and cou...

Dr. Durhane Wong-Rieger is the President and CEO for the Canadian Organization for Rare Disorders. She is involved and Chair to many committees and organizations. She is also an author, lecturer and trainer. She is the perfect person to talk with about making healthcare a level playing field for all.  As you know we have interviewed so many people on this podcast talking about the challenges in di...

The Rare Disease Advisory Council, (RDAC) has passed in at least 25 states so far.  This is a bi-partisan effort to give voice to people and their families who are living with a rare disease.  We're talking about 7 thousand plus rare diseases, which include cystic fibrosis. The RDAC would be housed in Michigan Department of Health and Human Services.  The Bonnell Foundation, along with MichBio, Na...

Healthwell is a foundation that helps people pay bills that impact 90 different disease groups. They cover what insurance does not.  The Bonnell Foundation will refer people to Healthwell when the financial need is greater than we can give, or if we don’t cover a certain request for funds.   Approximately 40 to 45 percent of the CF community is helped by Healthwell. Healthwell pays $25 million eac...

You will want to learn more about Bob Emmelkamp after this podcast, I promise! I feel like Bob is everywhere and supportive of everyone. Without a DNA connection to cystic fibrosis, Bob Emmelkamp became a lifelong CF fund-raising volunteer in 1976, when he helped put on a high school dance marathon where proceeds benefited the CFF. Since then, he has raised hundreds of thousands of dollars to adva...

Melodie Ramone and I met on Twitter, before the pandemic. Melodie was supporting all my posts and I wondered why, did she have a CF connection?  She was, as it turns out, supportive of the CF community, but had no direct connection. The people with CF and their caregivers always had a place in her heart. Now she's written a book, Falls The Breath that has a character who has CF. A portion of the p...

Who will want to take on a person with CF?  That is the question many women born with the disease think about after high school. Megan Bauer thought about it a lot. Until she met Alec.  At 26 years old  the University of Michigan graduate is happily in love. But until she found her prince, she found a lot of men who couldn't handle dating a person with CF. Megan met Alec when she was 19 years old...

The CF community is a small one. It’s made up of 40,000 people with the disease in the U.S.  When you add two parents to the mix that’s 80,000 parents, then there are grandparents, siblings, Aunt and Uncles, friends and you get the picture. We have a small, tight knit community. Laura Bonnell thought it was important that the Bonnell Foundation reach out to volunteer for the Pipers Angels Crossing...

This is a love story about two people passionate about entertainment, writing and each other. In 2016 Clement ‘Clem’ Souyri, moved from Versaille, France to the United States. Clem is a lawyer who specializes in entertainment law. His career path landed him in the orbit of Travis Flores. Travis is a screenwriter and children's book author, and he has Cystic fibrosis. Travis is living because of hi...

54 years ago when Canadian, Lisa Bentley was born, enzymes weren't even in pill form. Diagnosed at age 20, Lisa was already in the midst of figuring out her life as a teacher and later, a world famous triathlete. She had 11 IRONMAN victories on several continents with at least one IRONMAN victory each year from 2000 to 2007. She is an author, coach, wife, and trainer. She talks about how mental st...

CF in the family. ​Making it your life's purpose. Then The Crossing for cystic fibrosis, from the Bahamas to Florida was born.  ​Travis' parents didn't know they had three children with CF.  When Travis's daughter Piper was always sick, CF didn't occur to him.    Then his sister LeeAnn was diagnosed with CF at age 40. ​Then another sister. And that's when Travis decided to have Piper tested, and t...

In January, The American Thoracic Society (ATS) held a webinar about the challenges facing CF families in low-income countries.  Drs. Samya Nasr and Grace Paul were key participants in the webinar. Two doctors who have been featured on this podcast. This is where I first saw I Dr. Hector Gutierrez. Dr. Gutierrez is the Raymond K. Lyrene Chair, Professor, and Director of the Division of Pediatric P...

The Live Fearlessly Foundation? It’s the creation of Jacob Venditti.  Jacob is a surfer and lover of life.  He's also a social impact entrepreneur, community builder, multimedia producer, keynote speaker, and passionate advocate for the cystic fibrosis community. He also has CF. Jacob was on the transplant list, with a lung function of 15 percent, then he was given the latest CF modulator and his...