Living With Cystic Fibrosis

(Please follow us wherever you get your podcasts, rate us and/or comment. Thank you)Part of the Bonnell mission, while doing these podcasts, is to raise awareness and shine the light on other Foundations who are also doing great things.  Today we’re going to tell you about the CF Trust in the United Kingdom.Belinda Cupid is the Senior Impact Adviser at Cystic Fibrosis Trust. For the past six years she has been a member of the research team at Cystic Fibrosis Trust, their work is making a big difference to people with CF and their loved onesBelinda works with colleagues to explain research grants, to bring to life progress made and put cystic fibrosis research news in context. Belinda does a lot. She collects, analyses, and interprets information on the impact of CF Trust-funded research. Her hard work helps Cystic Fibrosis Trust evaluate the outcomes of their funding and helps generate income to continue to fund cystic fibrosis research into the future. Belinda completed her PhD in biological chemistry, she h

This is our third podcast with Alan Klein, the Chief Development Officer Healthwell. As a reminder Healthwell was paying about $25 million each year for CF co-pays in therapeutics. But because of the lack of funding from their corporate sponsors they stopped helping existing patients and couldn’t help new applicatns with their CF bills. Healthwell closed their CF Treatment Fund to new and re-enrolling patients in 2023 with no word or idea when they would start up again. There was a lot of fear when this happened in August 0f 2023. The CF Vitamin and Supplement Fund did remain open, but there was also concern it may shut down.  With 40 to 45 percent of the CF population being helped by Healthwell, this was scary for many. The Bonnell Foundataion was refering people to Healthwell if we couldn’t meet patients’ financial requests.  So it was concerning for non profits like mine and many others who worried we could be overwhelmed with financial requests because Healthwell no longer had funding.The reason for this

(Please consider subscribing to our podcast and rating it. It helps us with promotion. Thank you)What a treat for all of us today.  Nicholas Kelly is in the house. I've wanted him on our podcast for a while.  Nick was diagnosed with CF when he was 3 months old.Nick has so many accomplishments.  He earned a bachelor’s and master’s degree from Bowling Green State University. Nick is a dietitian. But that is not all, he is an author, dancer, and a speaker. Once you start watching his videos you won’t be able to stop. Trust is something you must start from within, to trust externally. First trust yourself.Nicholas has done Ted X talks…Healing through the Human Experience. He also does motivational videos where he talks about fearing the truth.Everything Nicholas talks about is not CF, it’s about life.  Did CF play a part in his internal strength, lets find out….The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at:  thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex:  https://www.vr

Karen McEwan’s daughter, Elana, is 20 years old.  It’s been a complex journey from birth to today. Elana suffers from a rare, incurable disease called Primary Ciliary Dyskinesia (PCD).  This is the first podcast that is not about cystic fibrosis specifically, although you will see the connection. It’s about chronic illness and Mom’s connecting and parents doing all they can for their children. We go through the same anxiety, fear, frustrations, you name it, we can relate. Karen also has a younger daughter, Madison who does not have a rare disease.Karen is a strong person sharing her story, and the challenging journey she’s been on with her daughter.How did we meet? My brother’s wife, Lisa connected us. We were both advocating and Lisa Teicher thought we would enjoy having out. We met in a Starbucks the first time and didn’t stop talking. Moms who have kids with a chronic illness have so much in common. We bonded over chronic illness.     Please like, subscribe, and comment on our shows, whereve

Rena Barrow has two kids with CF, Jarrod is 22 and Jahsir is 3 years old. Over the years she’s witnessed a discrepancy in care for people of color.  Even after her 22 year old son was diagnosed, doctors weren't sure her newborn baby had CF, They told her, "Maybe it was sickle cell."  She fought until her son Jahsir was properly diagnosed. The delay in diagnosis took a toll on her little guy.  When he ate he was always in pain (not prescribed enzymes until diagnosis) so now he has an aversion to food. Rena is motivated by her personal and avoidable situation to raise awareness so others don't go through what she did.Their experience with diagnosis of CF is sadly still too common. Between 2001 and 2005 they tried to figure out what health condition their son had. They were accused of not feeding him or caring for him properly prior to his diagnosed.Rena is speaking out for black, indigenous and people of color or BIOPIC.To get in contact with Rena: twosaltyokes@gmail.comPlease consider making a donation: https:

I am excited that all of you will get to meet  Dr. Susanna McColley!!!!  I was so impressed with her commitment to CF and her incredible medical and life knowledge.  Dr. McColley works to promote equitable diagnosis and treatment in cystic fibrosis. As a white person, Dr. McColley talks about all that white privilege brings, and what we must remember along the way. "Privilege allows you to go through the world without additional scrutiny". She goes on to say, people who differ, who are not white, are still treated differently. Dr. McColley discusses this in today's  podcast.Dr. McColley's biography:Susanna A. McColley, MD, FAAP, ATSF is a pediatric pulmonologist whose research focuses on improving the health of people with cystic fibrosis though understanding health disparities, improving methods for screening and diagnosis, and testing new treatments. She leads a multidisciplinary team of clinicians, community members and public health professionals to improving timeliness and equity of CF newborn screening.

Caroline Heffernan talks to CF families about all sorts of things, employment, family support, housing issues, cross infection, fertility…you name it. Caroline talks all things CF.  As someone with CF she knows what she’s talking about.  She’ll even discuss End of Life with CF families. Caroline volunteers for CF Ireland.Caroline,  is 53 years old, and pushes the power of exercise. She’s a cycler, she’s ran a marathon on 2008, did the Barcelona Ironman in 2018, and in July of this year climbed Kilimanjaro.  She assisted in the Guinness World Record Attempt for the Highest Harp Concert in aid of CF Ireland. She also reminds everyone with CF to think about what your Kilimanjaro is. It could be just climbing the stairs. Don't compare yourself to anyone. You do you.She lives in Ireland with her husband Francis, kids Jamie and Anna and grandson Milo.Find out more about Caroline's trek up Kilimanjaro and the fundraising for CF Ireland: https://highestharpconcert.com/ Link to the story of Triona Priestly, and singer

Carre Callaway (Queen Kwong) tours in the U.S., U.K. and wherever her music takes her.  Carre ended her tour and was in Los Angeles when we talked with her on this podcast.  She talks about how music was a coping mechanism for her chaotic life.  When Carre was 17 years old, a chance meeting with Trent Reznor of Nine Inch Nails, turned her life around. Carre and I met after she was newly diagnosed with CF when she was 30 years old (being a white American and of Chinese descent her doctors didn't think she could have CF), and amid a messy divorce with a famous musician.  She talks about being abandoned by her husband and friends after the diagnosis.This is her first in-depth discussion about life with CF.Carre talks about how she went into survival mode and being in what felt like a hopeless situation. Carre embraced being an imperfect human and figured out how to thrive inspired by her massive loss.Carre has released three records, and is in the process of writing a book about life with CF.  Life with CF as a

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 why he decided to become a CF doctor.You are a specialist in so many areas, in addition to CF, in sleep medicine as well.  Why did you decide to become a doctor, and specifically why did CF draw you in?I wanted to do this podcast to highlight all the great things that you and Dr. Susan Millard are doing and Dr. Johanna Zea-Hernandez. Overall how many patients do you have in the pediatric department and what are you seeing since the latest modulator came about in 2019?(Laura did have a cold through this podcast).--------------------------------John Schuen serves as division chief of Pediatric Aerodigestive Specialties a

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, her strength, her drive, her everything! Bernie has written about the challenges facing CF families on her blog My Little Miss Salty, and she has written for The M Word and MummyPages. She has worked on a voluntary basis as a CF patient advocate in CHI Temple Street and as a campaigner during the #YesOrkambi campaign in 2016/17, with the support of Rothco, the advertising agency she worked with at the time. She has been a speaker at the Cystic Fibrosis Ireland Conference and at the new parent information day in Temple Street, as well as featuring in Humans of Dublin by Peter Varga.Bernie and her daughter, Eva, recently

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 successful disease prevention and detection programs in the U.S. it began in 1962 and CF was added in 2007.Our experts have the answers. Dr. Samya Nasr is a pediatric pulmonologist at the University of Michigan, and she is the Coordinator for the NBS since 2007.Mary Kleyn is an epidemiologist for the NBS. She has been with the Michigan Department of Community Health since 2008.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGen

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 Healthwell when the financial need is greater than we can give, or because we don’t cover a certain request for funds.  Approximately 40 to 45 percent of the CF community is helped by Healthwell. Healthwell used to pay about $25 million each year for CF co-pays in therapeutics. But because of the lack of funding from their corporate sponsors. Healthwell had to close their CF Treatment Fund to new and re-enrolling patients. There is a lot of fear since this happened in August, but the CF Vitamin and Supplement Fund we were told would remain open, but now that may also disappear in 2024.This podcast answers all your ques

(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 lives in Ramat Hasharon (10 minutes from Tel Aviv) with her husband Aviad and their three children. Their daughter Noya is 14 years old, sons Yahav and Segev are 11 and almost 8 years old. Nirit takes us on her daily journey of running to the safe room with her family when sirens blast, to her hesitation to leave her house.  She gives us a very day to day look at what life is like during a war.  Nirit told me that she held it together during this interview so that she could describe all that is happening around them, but she said it is very hard to hold it together, but she must. There is no time to process she says, y

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 girlfriend, Jean, and losing her to the disease.Rory is married to Sarah and they have two daughters.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Genentech: https://www.gene.comViatris: https://www.viatris.com/en

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 bias and racism in medicine. She also talks about the importance of representation in the field of medicine. I hope after you hear this podcast you are more inspired to speak up and do more to change the world.About Dr. Taylor-Cousar:Dr. Taylor-Cousar is a tenured professor of adult and pediatric pulmonary medicine at NationalJewish Health (NJHhttps://www.nationaljewish.org/home), where she serves as the Medical Director of Clinical Research Services,President of the Medical Staff, and is co-director of the Adult Cystic Fibrosis (CF) Program andDirector of the CF Therapeutics Development Network (TDN) center. She receive

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 Femme Fatale staffing and marketing business. She will tell us about all four of her companies.  She talks about grief, losing her sister to CF, her Mom to cancer, and the struggles her father faced as he also has cancer.The CF population is small compared to the U.S. at over 4-thousand compared to 40-thousand here, but we’re in this together.  Thanks to my Canadian producer, Beth Vanstone, we are all learning about the wonderful people with CF in Canada. Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: t

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 speaking.  So we’re glad to have him on our podcast.  He is also a spokesperson for Polaris.His energy will inspire you!Marten lives in Crowsnest Pass in Alberta, Canada with his wife Janine, 11 year old daughter Kabrina and 13 year old son Noah.See Marten DeVlieger and his vest: https://mymonarch.comProducer: Beth Vanstone  If you'd like to be featured contact her at: beth@thebonnellfoundation.orgPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Genentec

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 the country with flower shops and open land.  A beautiful place indeed.  This is where we find Rory Tallon. He’s 51 years old with CF and he is a patient advocate for CF Irelands service team.  They provide information, guidance, grants and advocacy. He joined the organization in 2016.Rory comes from a pharmaceutical and clinical management background.And he graduated with degrees in Industrial Microbiology with chemistry and Biological Sciences.  Rory and wife Sarah have daughters Florence and Aine.  (We also did a part two with Rory that will air on October 23rd)To find out more about CF Ireland: https://www.cfirel

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 children with her husband,  Danny.  Even after she was diagnosed her doctor still did not refer her to a CF clinic. So when she gave birth to her twin daughters, she was suffering from pneumonia.  The twins are 10 months old today. Here is her story.Producer: Beth Vanstone  If you'd like to be featured contact her at: beth@thebonnellfoundation.orgPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comV

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 Bridge of Hope and what they do, so feel free to go back and listen to that if you want to find out more. She is also a Patient Family Partner and Quality Improvement Leader on the Pediatric CF Care team at Columbia Presbyterian Hospital in New York City since 2017. Bean is also an artist who paints endangered animals in oils and works in pottery. Bean and her husband live with their dog Rosie.Today we’re talking about Bean and her son Will. Will cannot take the CF modulator, and we discuss what it does to you mentally and physically.  Will is 26-years old and lives in Chicago. Will was diagnosed with CF at 3 months ol