Shows
Living With Cystic FibrosisSweat Chloride: More Than Just a Number with Dr. Patrick SosnayIf you’ve ever been part of the cystic fibrosis community, you’ve probably heard of the sweat chloride test, maybe you’ve even had one yourself. But what does that test really measure, and why does it still matter in the age of CF modulators?Laura talks with Dr. Patrick Sosnay, Vice President and Head of CF Development at Vertex Pharmaceuticals. Before joining Vertex, Dr. Sosnay was a clinician and researcher at Johns Hopkins, where he helped define the genetic criteria for diagnosing CF and co-founded the influential CFTR2 database.Dr. Sosnay brings his expert...
2025-10-2017 minLiving With Cystic FibrosisFrom Patient to Powerhouse: Leslie Baldwin's storyThe challenges and triumphs of living with a rare disease. Leslie Baldwin shares her personal journey with Common Variable Immune Deficiency and Ehlers-Danlos Syndrome. You'll hear what fueled her passion for advocacy and the creation of Michigan Rare (MI-RARE). Together, they discuss the power of community, the importance of patient empowerment, and how collaboration with policymakers can expand access and resources for those living with rare conditions.TakeawaysAdvocacy is essential for the rare disease community.Building connections provides vital support.Patients should feel empowered to speak up for their health.
2025-09-1533 minLiving With Cystic FibrosisAdvocacy in Action: From the Front Lines “It’s an honor to be an advocate,” says Laura Bonnell, founder of The Bonnell Foundation. “We are the government—people are. If we don’t fight for fair laws that help the people they’re meant to serve, who will?”In this episode, Laura is joined by five passionate advocates—some seasoned, some new—who recently traveled to Washington, DC, to meet with lawmakers. Together, they share their personal experiences, insights on advocacy, and why storytelling and persistence matter in influencing policy.The conversation highlights:How to build relationships with legislative staff...
2025-07-2152 minLiving With Cystic FibrosisVoices of Care: A Live and Unfiltered ConversationLive from Mix and Mingle Education Day: A Powerful Conversation with CaregiversIn this deeply moving live episode recorded at the Mix and Mingle Education Day, we brought together a powerful group of caregivers—grandparents, parents, stepparents, dads, and friends—for a heartfelt discussion about the emotional journey of caring for a loved one with cystic fibrosis.What started as a simple idea to gather voices turned into our most beautiful and emotional podcast yet. There were tears, laughter, and unforgettable stories. We were honored to be joined by a Grief Counselor who helped guide us t...
2025-05-261h 16Living With Cystic FibrosisBob Coughlin, CF Dad: from Congress to ScienceCF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a...
2025-03-1045 minLiving With Cystic FibrosisAdvocate, Amanda BooneSaving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB). Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Amanda Boone I would say is a rock star advocate in the CF and rare disease community. She...
2025-01-271h 05Living With Cystic FibrosisRare Disease Ph.D. Beth Vanstone and Laura BonnellAre titles important? As a rare disease parent, we think you're worthy of a Ph.D. Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done.As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old. Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is thanks to her efforts.Laura Bonnell and Beth Vanstone have been advocating a total of more than 50 years co...
2024-11-2527 minLiving With Cystic FibrosisTouraj Manshadi falling through the gaps in health policyWe’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell.Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American’s thinking that medically everything is better in Canada, but that’s not true. Many countries around the globe are struggling with the high cost of drugs for Rare...
2024-10-1436 minLiving With Cystic FibrosisLaura Bonnell - From news reporting, to CF and beyond.From news reporting, to CF and beyond. Laura talks about her journey. The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off, and now look at it! We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Education Scholarships. Our programs have also grown, with more on the way. We're so glad you're a part of it".To reach Laura: thebonnellfoundation.orgOr follow us on social media (see below)
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2024-09-3031 minLiving With Cystic FibrosisRemembering Matt McCloskey of Take a BreatherShortly after we did this podcast Matt died from complications of cystic fibrosis. With permission from his sisters, and dear friend Jennifer Bleecher (featured in this podcast) we are now airing this podcast to shine a light about what a great man Matt was. He speaks in this podcast about concern for his health. Thanks to Jenn, his family and to Matt for all he gave to the world and especially the CF community. You are missed and will never be forgotten.From his sisters Molly McBryan and Ame Austin:"After an extremely long hard fo...
2024-06-2437 minLiving With Cystic FibrosisLaura and Beth talk about what makes a Foundation work!Everyone always asks me "What does it take to run a Foundation?" So I thought I would explain some of the different aspects of funny and challenging parts of running a Foundation.Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is all about!Please follow us on social media!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:
2024-04-2240 minLiving With Cystic FibrosisMindfullness and CF with Aliyah NovelliAliyah Novelli was diagnosed with cystic fibrosis as an infant. Today, she's a licensed social worker practicing as a child and family therapist at The Center for Change and Growth in Ardmore, PA. Aliyah is full of enthusiasm about her new program: mindfulness. The CF Foundation awarded her with a CF Impact grant to get it started. Aliyah launched her mindfulness program this year. It's for a program for adults 18 to 35 years old on CF modulators.Aliyah earned her master's degree in social work at the University of Pennsylvania. She also got a bachelor's degree in Fine Art...
2024-03-1830 minLiving With Cystic FibrosisCF Trust, U.K. with Belinda Cupid(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...
2024-02-2640 minLiving With Cystic FibrosisThe extraordinary, Nick Kelly.(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...
2024-02-1244 minLiving With Cystic FibrosisKaren McEwan and Laura bond over chronic illnessKaren 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...
2024-02-0545 minLiving With Cystic FibrosisTwo Salty Okes, Rena Barrow's storyRena 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 pe...
2024-01-2940 minLiving With Cystic FibrosisDr. Susanna McColley talks health equityI 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...
2024-01-2254 minLiving With Cystic FibrosisCF Woman climbs Kilimanjaro (Caroline Heffernan)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 Har...
2024-01-1544 minLiving With Cystic FibrosisQueen Kwong, AKA Carre Callaway -rock n roll and CFCarre 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 ami...
2024-01-0850 minLiving With Cystic FibrosisDr. John Schuen, life at the Grand Rapids CF clinicPlease 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 dec...
2023-11-2731 minLiving With Cystic FibrosisBernie Martin - CF Mum in IrelandBernie 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 Wor...
2023-11-2040 minLiving With Cystic FibrosisNewborn Screening, will you be diagnosed with CF?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...
2023-11-1343 minLiving With Cystic FibrosisThe fate of Healthwell, what is their future?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...
2023-11-0627 minLiving With Cystic FibrosisCF in Israel, during a war...(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 ar...
2023-10-3044 minLiving With Cystic FibrosisRory Tallon, Dating someone who also has CF.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...
2023-10-2330 minLiving With Cystic FibrosisDr. Jennifer Taylor Cousar - our CF super hero doctorPlease 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 inspire...
2023-10-1636 minLiving With Cystic FibrosisEntrepreneur Emily Lyons success in the midst of tragedyEmily 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 th...
2023-10-0940 minLiving With Cystic FibrosisEntrepreneur Marten DeVlieger.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...
2023-10-0244 minLiving With Cystic FibrosisRory Tallon, CF IrelandPlease 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 patie...
2023-09-2548 minLiving With Cystic FibrosisCF Warrior Asia Diaz. Late diagnosis. Delivers baby while suffering pneumonia.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...
2023-09-1826 minLiving With Cystic FibrosisLife without Trikafta, Will Corcoran (and Mom, "Bean")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...
2023-09-1134 minLiving With Cystic FibrosisNight of Hope Keynote speaker, Jerry CahillIf 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 counting! Jerry takes us through the “CF Dark Ages” as he calls it, to the present. What a journey.Jerry Cahill...
2023-09-0532 minLiving With Cystic FibrosisDurhane Wong-Reiger, expert on access in low income CountriesDr. 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 different countries to medications. In Egypt the Ministry of health doesn’t recognize the disease, CF families there don’t have the basics like liquid vitamins for their infants. In Thailand, it’s the s...
2023-08-2850 minLiving With Cystic FibrosisHealthWell Foundation - going out of the CF business?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 each year for CF co-pays in therapeutic drugs. This could all change. There is a lack of funding from Corporate sponsors. Healthwell sent out a letter that stated they will have to close their CF Tre...
2023-08-1427 minLiving With Cystic FibrosisDeliverer of CF Hope, Bob EmmelkampYou 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 advance research for a cure for CF, spreading the word and explaining the latest CF research news, and personally funds grants to the labs of some of the top...
2023-08-0749 minLiving With Cystic FibrosisAuthor, Melodie RamoneMelodie 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 proceeds will go to The Bonnell Foundation.First published in literary magazines at the age of twelve, Melodie Ramone is a...
2023-07-3135 minLiving With Cystic FibrosisRomance and CFWho 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 at the University of Michigan, and they have been together for 7 years. They are planning their June 2024 wedding. Megan wor...
2023-07-1730 minLiving With Cystic FibrosisThe Crossing for CF: On Location (West Palm Beach, Fla.)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 for CF event. It was the weekend of June 23rd, 2023. It’s so important that we support one another.This podcast playfully shows the camarader...
2023-07-1049 minLiving With Cystic FibrosisClement and Travis - a love story about caregivingThis 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 his third double-lung transplant. Travis and Clem have been together for more than 6 years and are now facing a new challenge. Travis’ is in end stage of renal disease. Thank...
2023-07-0534 minLiving With Cystic FibrosisLisa Bentley - A Canadian powerhouse athlete54 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 strength and positive talk are everything, and it's important to remember who you are and why you're doing what you do.She brings us so much wisdom in this podcast. Sh...
2023-06-2640 minLiving With Cystic FibrosisPiper's Angels - A Dad and daughter love storyCF 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 then himself. His story is almostunbelievable. You will find his journey inspiring, and once you hear about all he is doing for the CF community, you'll...
2023-06-1949 minLiving With Cystic FibrosisDr. Hector GutierrezIn 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 Pulmonary and Sleep Medicine at the University of Alabama at Birmingham (UAB). Dr. Gutierrez is native to Chile, where he did medical school and pediatric residency. He did his subspecialty training a...
2023-06-1241 minLiving With Cystic FibrosisSurfer Jacob Venditti Lives Fearlessly with CFThe 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 lung function jumped up to 50 percent. He has no need for a transplant at this time. He is proud to say he has not been hospitalized in three years.Jacob recently launched a new...
2023-06-0521 minLiving With Cystic FibrosisFrom diagnosis to Foundation: Laura BonnellLaura Bonnell, the Host of the Living with cystic fibrosis podcast, does a solo podcast this time around. This is her story, life without CF, diagnosis (here comes CF ready or not) and starting a Foundation. It turns out that her path was always aligned with cystic fibrosis, from meeting Dr. Francis Collins (former director of the NIH and one of the scientists who discovered the gene that causes CF).From news reporter to CF advocate.The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to o...
2023-05-2940 minLiving With Cystic FibrosisAttorney Beth Sufian (who has CF) talks social securityThe CF Legal Information Hotline. A brilliant idea. The woman who made it happen is 57 year old Beth Sufian, who has CF.Attorney Beth Sufian works just about around the clock helping and answering questions from people in the CF community. On the CF Legal Hotline they get 900 calls - a day! Beth has helped The Bonnell Foundation help others. She is well known in the CF community. We talk about the CF Social Security Project. There is so much to learn if you're considering social security.Beth is the Director of the CF Legal Informa...
2023-05-2243 minLiving With Cystic FibrosisCF Realities in IndiaWe need to education and come up with solutions to help the people of India with cystic fibrosis. Facts of CF in India:There are 40,000 people diagnosed with CF in the U.S. and 70,000 worldwide, but the Bonnell Foundation is certain those numbers are low. CF doctors in India and the U.S. believe that there could be between 35,000 and 140,000 people with CF in India (India has a population of 1.4 billion). The life expectancy in India for someone diagnosed with CF today is between 7 to 12 years old. If you live into your 20's that is cons...
2023-05-151h 06Living With Cystic FibrosisBeing heard: CF and diagnosis when your African AmericanIt's 2023, surely now people of color are correctly being diagnosed with cystic fibrosis right? Nope. They are still underdiagnosed. We hear about it happening in low income countries, but it's happening right here in the USA. Rachel Alder was diagnosed barely 5 months ago, at age 26. She was misdiagnosed until January 2023. Rachel was born before newborn screening could detect CF. And, because not all mutations are under represented in testing, her diagnosis would still most likely have been missed. We have to change this.Rachel Alder today, or Rae as she likes to be called has been...
2023-05-0840 minLiving With Cystic FibrosisMedora FreiThe CF community is a small, tight knit group. There are 40-thousand patients with CF in the U.S., and double the amount of parents. many of us in the CF community know each other, or have heard of one another.I did a podcast about CF Vests Worldwide, and todays guest, Medora Frei, reached out to Rod Spadenger to tell him how much she enjoyed the Living with CF podcasts. Medora listened to every podcast we have produced. She wrote the nicest note to me after Rod connected us. She said our podcasts have "helped her, va...
2023-05-0135 minLiving With Cystic FibrosisCF Spouses: Zack and Farrel both have CFPeople getting married who have CF. We don’t hear it happening very often. We’ve always been told that people with CF should not be in the same room, unless they are 6 feet apart. This is impossible to do if you have children with the disease, and of course if you marry someone with CF.Zack and Farrel both have CF, knowing the reasons why they shouldn’t marry, did not keep them apart. They met in 2014 in a Facebook Cystic Fibrosis group where Farrel was sharing a testimony of how changing her diet had helpe...
2023-03-0643 minLiving With Cystic FibrosisCF conversations held by a Michigan CF clinic!Does your CF clinic offer a place for you to express your concerns and successes about CF? The University of Michigan Medical Center started a zoom program during the pandemic that allowed its adult patients with CF to discuss what's on their mind. The topics cover a variety of concerns people with CF face. And thanks to the need and social worker Mari Pitcher, the program is back!Mari is a licensed clinical social worker specializing in adjustment, grief work, trauma work and patient and family centered care for individuals, and their families, with chronic and life li...
2023-02-2729 minLiving With Cystic FibrosisCF Bridge of HopeImagine having children with CF and living in another country. In your country they don't have any CF medications, and maybe only a handful of people have been diagnosed with the disease. Even testing equipment is difficult to come by. Doctors in your country don't have a lot of knowledge about CF, and basic medications aren't accessible. The Bonnell Foundation and others have worked tirelessly to raise awareness, and to make change in many middle eastern countries, but it's a slow process.This is why we're excited to tell you about the non-profit Dr. Golnar Raissi and her...
2023-02-2039 minLiving With Cystic FibrosisIndubiousIndubious. Live Indubiously. Indubians. What am I talking about? The band Indubious was founded by two brothers, 38 years old Evan Burton and 41 year old Skip Burton. Both happen to have CF. They recently released an incredible documentary about their CF journey. Both Evan and Skip have both been through so much since their diagnosis all those years ago. We're taking you backstage, to get the story from Evan about life with CF, the band and the future.The Bonnell Foundation: https://thebonnellfoundation.orgThe Bonnell Foundation email: thebonnellfoundation@gmail.com Indubious, the band: https...
2023-02-1341 minLiving With Cystic FibrosisCF Warrior Project: Andy LipmanAlmost everyone in the CF community knows who Andy Lipman is and all the contributions he has made. Andy, and his older sister Wendy were born with cystic fibrosis. Wendy died when she was only 16 days old. The Lipman family founded The Wish for Wendy Foundation, in her honor. Andy has a youngster sister Emily, who was adopted. To raise funds for his Foundation Andy has written several books that fall under the CF Warrior Project name. The CF Warrior Project is what Andy calls a movement. He has raised millions of dollars to help fund research and raise awar...
2023-02-0636 minLiving With Cystic FibrosisCF in Thailand: one on one with Dr. Haruthai KamalapornDr. 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 Mahido...
2023-01-3030 minLiving With Cystic FibrosisGPS Vertex program: explainedIf 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...
2023-01-2335 minLiving With Cystic FibrosisCure Found MSU - Pre-medical students changing the World19 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 th...
2023-01-1621 minLiving With Cystic FibrosisDental 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 Laura Bonnell will talk with Holli Seabury, the Executive Director of the Delta Dental Foundation. Ms. Seabury has a wealth of information about den...
2023-01-0939 minLiving With Cystic FibrosisCF Vests WorldwideNot 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...
2023-01-0235 minLiving With Cystic FibrosisAll things Lung Transplant with Jen WeberAttorney 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 per...
2022-12-0528 minLiving With Cystic FibrosisA Kid Again AdventuresWe’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 th...
2022-11-0730 minLiving With Cystic FibrosisOur first CF Podcast in SpanishDr. 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...
2022-10-0328 minLiving With Cystic FibrosisCostly 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 tod...
2022-09-1233 minLiving With Cystic FibrosisAndrea and Alyson HoffmanAndrea 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 he...
2022-07-1144 minLiving With Cystic FibrosisDr Jennifer SheddenDr. Jennifer Shedden, with Genentech, 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...
2022-07-0539 minLiving With Cystic FibrosisWes Hawkins -CF with PRIDEAs 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...
2022-06-2751 minLiving With Cystic FibrosisMy 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 suppo...
2022-06-2023 minLiving With Cystic FibrosisLaura Varon BrownFormer 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. J...
2022-06-1337 minLiving With Cystic FibrosisGeneticist, Amy Gaviglio talks CFCystic 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...
2022-06-0637 minLiving With Cystic FibrosisDr. Johanna Zea-HernandezThe 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...
2022-05-3036 minLiving With Cystic FibrosisCF in Canada with Beth VanstoneCystic 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...
2022-05-2343 minLiving With Cystic FibrosisDr. Ryan ThomasWe’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.thora...
2022-03-2137 minLiving With Cystic FibrosisAuthor Bijal TrivediBijal 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 Senio...
2022-02-2855 minLiving With Cystic FibrosisFuture 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 Mic...
2022-01-2433 minLiving With Cystic FibrosisA transplant in the pandemic (for her son), Joan Galinkin 's storyJoan 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 Bonn...
2022-01-0332 minLiving With Cystic FibrosisMums to Moms 261 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 mor...
2021-11-2241 minLiving With Cystic FibrosisNutrition with MIchele Ciancimino, not mainstream high fat diet!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 pe...
2021-10-2530 minLiving With Cystic FibrosisKate Bryan of 1 Girl RevolutionHow 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...
2021-10-181h 02Living With Cystic FibrosisCF Dad's have a lot to say!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...
2021-08-2332 minLiving With Cystic FibrosisCanadian Author Chris MacLeod (who has CF)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/Ve...
2021-07-1236 minLiving With Cystic FibrosisMums to Moms: talking CF from Canada to the U.S.Cystic Fibrosis Moms, who have never met, have a common bond: they know what a disease does to their child(ren), marriage and to their mental health. Laura Bonnell, Beth Vanstone and Patti Tweed all have one or more kids with the disease. The women came together to discuss all the challenges Moms (and Mums in Canada) face. Their hope is to get Mom's talking to each other about all the challenges they face. We will feature other Moms and clinical experts too. We want your input so please shoot us an email: thebonnellfoundation@gmail.com Thank you.Fo...
2021-07-0528 minLiving With Cystic FibrosisNeal SmithInternational Biophysics Corporation (IBC) creates innovative medical devices. Their devices improve treatment therapies and patient outcomes. For cystic fibrosis patients IBC created the afflovest. Prior to the pandemic Bonnell Foundation founder, Laura BonnellI tried on a vest at the North American CF Conference (NACFC) in Nashville. President and Ceo David Shockley was show parents, patients and doctors the vest. Shockley is a wonderful, down to earth person who is commitment to making life better for people with a disease or condition. IBC also makes cools things like ozone generators for the space shuttle. They make heart pumps, surgical tubing and mor...
2021-05-3128 minLiving With Cystic FibrosisJordan Gillette, Trucker with CFJordan Gillette and I met on twitter! Jordan is a long time WWJ Newsradio 950 listener. Jordan started listening to WWJ when his Dad had it on in the car, and he continued to listen to it on his own. Jordan heard my stories on WWJ, and he enjoyed all the WWJ personalities. What he didn't know until he heard my Public Service Announcement (PSA) was that I had two daughters with cystic fibrosis. Jordan is a truck driver and he has CF. On his long trips he does his treatments in the truck. He loves his girlfriend, but even he'll...
2021-05-2434 minLiving With Cystic FibrosisAndy Lipman, AuthorForty seven year old Andy Lipman talks about what propelled him to write several books and start the CF Warrior Project. You'll be inspired by Andy's story! Lipman is a positive role model, who defied all odds to become a college graduate, Olympic-torch bearer, runner, advocate, author, husband, and father. Dedicated to finding a cure for this genetic disease, Andy works tirelessly to raise awareness and funds for the terminal, invisible disease.For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility. https://www.vrtx.co...
2021-05-1738 minLiving With Cystic FibrosisRepresentative Mike Mueller and his sister Madeline Elmhirst (who has CF)Representative Mike Mueller's older sister was diagnosed with cystic fibrosis (CF) at four years old. Growing up with a sister having CF gave Rep. Mueller a lot of compassion for people living life with a health challenge, and impacted his life of public service. The two have a strong bond of love and understanding. It's a heartfelt story about the fear about what CF does to his sister, his fears, pushing through it. Rep. Mueller also is the co-author of the resolution to make May, CF Awareness month (Rep. Jim Ellison is the other). Rep. Mueller is also the co...
2021-05-1044 minLiving With Cystic FibrosisState Representative Jim Ellison is committed to cystic fibrosisState Representative Jim Ellison is a long time friend to the Bonnell Foundation and it's founder, Laura Bonnell. Bonnell and Rep. Ellison met when she was a news reporter at WWJ and would call on Rep. Ellison for a comment, or she caught up with him on the road. Bonnell told Rep. Ellison about her Foundation, and the reason she started it was because her girls had the disease. Rep. Ellison (and his wife Jodie) were all in, right away. Each year Rep. Ellison introduces a resolution to make May CF Awareness month.For more information on T...
2021-05-0321 minLiving With Cystic FibrosisChild number 5 has CF: Lily and Jon in shock at first, then learn to live with CF.Lily and her husband Jon had 4 children and they were content. They bought a little farm in Ohio. Jon is a former Marine now working as a civilian to support his family. Then months after a tubal ligation, she found out she was pregnant! Before baby #5 made her debut...Lily faced some serious health issues and then their daughter Bonnie was born with CF. Hear their amazing story.For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility. https://www.vrtx.comThe orig...
2021-04-2649 minLiving With Cystic FibrosisBreathe Bravely: Giving Voice to CF. Our guest Ashley Ballou-BonnemaAshley Ballou-Bonnema was featured on CBS Sunday Morning, with Jane Pauley. That's when I saw her, and screamed from the couch! I backed up the program to get her name, and knew that I had to get in touch with her. She shined so brightly in that moment, as she says on her Breathe Bravely website, she was "Giving voice to CF."Ashley's brother also had CF. She describes how life was growing up with a brother who wasn't diagnosed for the first 7 years of his life, and how it affected her parents' marriage. Ashley's brother was very...
2021-04-1247 minLiving With Cystic FibrosisScientist, Poet, author, introducing Dr. Paul QuintonDr. Paul Quinton's early discovery of the defect in CF that prevents chloride ions from crossing cells changed our CF world, and his work allowed us to get to where we are today. When he made his discovery he yelled, "Eureka!" Dr. Quinton, now 76 years old has cystic fibrosis so this was personal. He actually diagnosed himself at the age of 19. The Bonnell Foundation loves this man!For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility. https://www.vrtx.comThe original mus...
2021-03-2949 minLiving With Cystic FibrosisProject CF SpouseFor more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/Find Project CF Spouse here: https://www.projectcfspouse.com/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/
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2021-03-1525 minLiving With Cystic FibrosisNational Organization of African Americans with Cystic Fibrosis (NOAACF)Thirty thousand people in the United States have cystic fibrosis, and 5 percent of those people are African Americans. At least that's what the statistics show. Michele and Terry Wright believe (and the Bonnell Foundation agrees) that the percentage is actually higher. The problem is that people who are African American aren't being properly diagnosed. This is why the couple (Terry has CF) started The National Organization of African Americans with Cystic Fibrosis. Terry wasn't diagnosed with cystic fibrosis until he was 54 years old. Listen to their amazing journey.For more information on The Bonnell Foundation, find us at...
2021-03-0832 minLiving With Cystic FibrosisThe Middle East CF AssociationThe Middle East CF association (MECFA) is working to make lives better for people cystic fibrosis. Christine Noke is the co-founder and CEO of MECFA. The stories you will hear in this podcast are sometimes gut wrenching and unimaginable. It will also inspire you to help raise awareness about CF everywhere, and make sure that someday everyone has a level playing field in healthcare. Noke says their goals are simple - to improve: Life expectancy and quality of life for CF patients regionally Access to CF Care Centers, Standards of Care Access to necessary drugs and equipm...
2021-02-2447 minLiving With Cystic FibrosisCF Vests 4 LifeCF Vests 4 life was started by Rod Spadinger and Mark Tremblay. They're on their journey to becoming a 501(c)3. They're doing great work helping people all over the world get the medical vests they need (to break up that thick, sticky mucus in their CF lungs). They also help with medications. In this podcast we will talk about what they do, who they have helped and some of their biggest challenges. Touching stories about people with CF all over the world. For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find u...
2021-02-0144 minLiving With Cystic FibrosisCF in Egypt Episode 3 - Dr. Samya Nasr and Dr. Maggie NaguibDr. Maggie Naguib works at Cairo University in Egypt and is a Professor of Pediatrics. She talks to Host Laura Bonnell in this podcast, along with Dr. Samya Nasr from the University of Michigan hospital. Dr. Nasr is the Director of the CF clinic and professor of pediatrics. Dr. Naguib shares her struggles as a doctor in Egypt who has helped diagnosed 1,000 people with cystic fibrosis. This is thanks to the help of Dr. Nasr who travels back to Egypt once a year. Dr. Nasr arranged for sweat test machines so that doctors could start testing for the disease. Famil...
2021-01-2534 minLiving With Cystic FibrosisCF in Egypt Episode 1 - Dr. Samya NasrPodcast Episode: Dr. Samya Nasr – Changing the CF Landscape in Egypt and BeyondIn this powerful episode, we’re joined by Dr. Samya Nasr, Director of the Cystic Fibrosis Clinic at the University of Michigan and Professor of Pediatrics, whose work has reshaped how CF is recognized and treated across borders.Back in 1997, Dr. Nasr began raising a red flag in her home country of Egypt, where many children were suffering from symptoms of cystic fibrosis—but going undiagnosed. At the time, some Egyptian physicians and the Ministry of Health believed CF didn’t exist in their...
2021-01-2536 minLiving With Cystic FibrosisCF in Egypt Episode 2 - CF Dad Anas MansourThirty-five-year-old Anas Mansour has 5-year-old twin boys with cystic fibrosis. He lives in Cairo, Egypt. Mansour and his wife are trying to keep the boys as healthy as possible, but it is challenging. The disease isn't officially recognized yet in Egypt, so insurance doesn't cover medications. The medications they do have access to aren't like anything we have in the United States. Even basic care, such as getting your hands on digestive enzymes for example, it is difficult and costly. Mansour believes he may have to leave his country to make certain his children get the medications they need. Things...
2021-01-2529 minLiving With Cystic FibrosisCF in Egypt Episode 4 - Dr. Eman Fouda and Dr.Samya NasrTwo doctors, (one who works in Egypt and one in the U.S.) talk about health inequities. In Egypt life expectancy for people with CF is 8 years old, it’s 50 years old in the U.S. Why? Dr. Eman Fouda works at Ain Shams University in Egypt. She is a Professor of Pediatrics. Also on this podcast is Dr. Samya Nasr, Professor of Pediatrics at the University of Michigan Hospital and Director of the CF Clinic. Dr. Nasr has helped diagnose 1,000 CF patients. She hopes to diagnose 10,000 more over the next few years.For more information on The B...
2021-01-2531 min
Living With Cystic FibrosisCF Mom TribeLaura Bonnell (Detroit), Kat Porco (Montana), Jen Caruso (Delaware) and Siri Vaeth (California) have have 5 children with cystic fibrosis between them. The kids are ages 14 to 25 years old. This CF Tribe of Moms has seen a lot. All of us have almost lost our kids to the disease. We're all going through the same challenges and joys. We wanted to share our hopes, fears, realities and plans for the future with all of you.
Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonn...
2020-05-1548 min
Living With Cystic FibrosisThe Bonnell girls talk CF: from London, England to DetroitThe reason the Bonnell Foundation began was because I had two daughters with cystic fibrosis. This episode is my girls perspective. They live life to the fullest. They both traveled to Nicaragua for a mission trip (different years with their High School class), studied abroad in Spain (Emily) and England (Molly). I decided not to let my fear run their lives. They have missed party's, school trips, events, school, college days and taken it in stride. They have skied with a picc line, been hospitalized in England with no family to care for her, but friends rallied. Emily's daily li...
2020-05-0127 min
Living With Cystic FibrosisCF Mom RoundtableIn our first episode, Laura Bonnell is joined by Michigan CF Moms Sam and Kim.
Laura has 2 daughters in their 20's with Cystic Fibrosis, Sam's 6 year old son Ethan is battling the disease, and Kim shares memories of her daughter Maggie. Between these three women, we take a journey through a CF diagnosis through an entire life with the disease.
As you'll hear, Living with Cystic Fibrosis can create many wonderful moments and shared experiences. However, no two journeys are the same.
Learn more about The Bonnell Foundation here.
Please...
2019-02-0241 min
Living With Cystic FibrosisLiving With Cystic Fibrosis Podcast TeaseBoth of Laura Bonnell's daughters have Cystic Fibrosis. Laura founded the Bonnell Foundation in 2010 to bring CF patients and their families together with resources to fight this disease. It may sound strange, but Laura sees the disease as a blessing. Join us as we choose joy.
Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
2019-02-0100 min