Living With Cystic Fibrosis
126 episodes - English - Latest episode: 6 days ago - ★★★★★ - 19 ratingsLiving with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire
Homepage Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
Episodes
Laura and Beth talk about what makes a Foundation work!
April 22, 2024 04:00 - 40 minutes - 37.4 MBEveryone 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.org Bonnell Fo...
Rabbi Moskowitz, embracing the Queer community
April 15, 2024 13:07 - 58 minutes - 53.8 MBHe’s been arrested. He’s CIS gender with a wife and kids. Rabbi Mike Moskowitz is also an orthodox Jew’is and he is one of the biggest supporters of the queer community. Rabbi Moskowitz is the Scholar-in-Residence for Trans and Queer Jewish Studies at Congregation Beit Simchat Torah, the world’s largest LGBT synagogue. He is a deeply traditional and radically progressive advocate for trans rights and a vocal ally for LGBTQ inclusivity. Rabbi Moskowitz received three Ultra-Orthodox ordina...
CF in Brazil, and one outstanding advocate
April 08, 2024 04:00 - 57 minutes - 52.8 MBWe’re going to Brazil for this podcast. Brazil is famous for some soccer players; you remember Pele and others. It’s the largest country in South America, it has 4 times zones…60 percent of the amazon rainforest is in Brazil, their flag has 27 stars on it and they speak Portuguese there. And the food looks amazing there. I have never been to Brazil, but Gabriel Johnson was born and raised there! Gabriel is the Projects and Institutional Relations Coordinator at Unidos pela Vida - Brazili...
Gut pain and CF, Dr. Jorge Machicado
April 01, 2024 04:00 - 23 minutes - 21.8 MBSo many people with cystic fibrosis have gut pain. It is often times, debilitating. Dr. Matthew DiMagno and Dr. Jorge Machicado are working to find answers to the suffering of people with CF, and others without. Dr. Machicado is a Clinical Assistant Professor in the Division of Gastroenterology and Hepatology at the University of Michigan. Dr. Machicado earned his medical degree from Universidad Peruana Cayetano Heredia in Lima, Peru, and received a Master of Public Health at Johns Hopkin...
Win Like A Girl - Maureen Electa Monte
March 25, 2024 04:00 - 49 minutes - 45.6 MBMaureen Electa Monte and I go ... way back! When she was an engineer, and doing photography, she photographed our first Portraits of cystic fibrosis black and white calendar in 2003. The wives of the Detroit Tigers, pretty much all of them pregnant, played in our first celebrity softball game. They played against law enforcement at a ballpark in Sterling Heights. Years ago when she was working at IBM she was the Engineer of the Year, she was a multi-sport athlete and MVP of her basketball ...
Mindfullness and CF with Aliyah Novellie
March 18, 2024 04:00 - 30 minutes - 28.3 MBAliyah Novelli was diagnosed with cystic fibrosis as an infant. Today, she's paying it forward as a social worker at Jefferson Adult CF center in Philadelphia. 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 Penns...
Mindfullness and CF with Aliyah Novelli
March 18, 2024 04:00 - 30 minutes - 28.3 MBAliyah 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 soc...
CF Mom Vicky Maldonado talks Ultra Rare CF mutations
March 11, 2024 04:00 - 38 minutes - 35 MBCanadian, Vicky Maldonado is the mother of a young boy living with a rare genetic form of CF. Sebastian is 6 years old, and a twin. The road to diagnosis was challenging. Sebastian was diagnosed with two rare CF genes after repeated respiratory infections and two hospitalizations. “We were told that Sebastian likely didn’t have CF because he’s “not White”— his parents are Canadian-born Latinos from Ecuador. Though CF affects all races and ethnicities, there’s still a common misconception amo...
All of Us - Science, Innovation and YOU.
March 04, 2024 05:00 - 39 minutes - 36 MBA better future for health for: All of Us! Dr. Josh Denny is the All of Us Research program, CEO. A program that comes from the National Institute of Health. The Bonnell Foundation is all about Science and Innovation! And he has a CF connect via his father! The goal of All of Us is to enroll 1 million people to build one of the most diverse health databases in history. This would allow resources to accelerate precision medicine for all populations. This is critical to the future of our p...
CF Trust, U.K. with Belinda Cupid
February 26, 2024 05:00 - 40 minutes - 37 MB(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...
Healthwell again open to CF patients
February 19, 2024 05:00 - 19 minutes - 18.2 MBThis 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 fe...
The extraordinary, Nick Kelly.
February 12, 2024 05:00 - 44 minutes - 40.6 MB(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 vi...
Karen McEwan and Laura bond over chronic illness
February 05, 2024 11:00 - 45 minutes - 42.1 MBKaren 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 ...
Two Salty Okes, Rena Barrow's story
January 29, 2024 05:00 - 40 minutes - 37.2 MBRena 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...
Dr. Susanna McColley talks health equity
January 22, 2024 13:54 - 54 minutes - 49.6 MBI 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 w...
CF Woman climbs Kilimanjaro (Caroline Heffernan)
January 15, 2024 05:00 - 44 minutes - 41.1 MBCaroline 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 c...
Queen Kwong, AKA Carre Callaway -rock n roll and CF
January 08, 2024 05:00 - 50 minutes - 46.5 MBCarre 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 did...
Dr. John Schuen, life at the Grand Rapids CF clinic
November 27, 2023 05:00 - 31 minutes - 29.2 MBPlease 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,...
Bernie Martin - CF Mum in Ireland
November 20, 2023 05:00 - 40 minutes - 36.7 MBBernie 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 famil...
Newborn Screening, will you be diagnosed with CF?
November 13, 2023 05:00 - 43 minutes - 40 MBNewborn 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 i...
The fate of Healthwell, what is their future?
November 06, 2023 05:00 - 27 minutes - 25.2 MBPlease 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 ce...
CF in Israel, during a war...
October 30, 2023 04:00 - 44 minutes - 40.6 MB(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 chil...
Rory Tallon, Dating someone who also has CF.
October 23, 2023 04:00 - 30 minutes - 27.6 MB51 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 daught...
Dr. Jennifer Taylor Cousar - our CF super hero doctor
October 16, 2023 04:00 - 36 minutes - 33.1 MBPlease 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...
Entrepreneur Emily Lyons success in the midst of tragedy
October 09, 2023 04:00 - 40 minutes - 37.1 MBEmily 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. S...
Entrepreneur Marten DeVlieger.
October 02, 2023 04:00 - 44 minutes - 41.1 MBPlease 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...
Rory Tallon, CF Ireland
September 25, 2023 04:00 - 48 minutes - 44.2 MBPlease 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...
CF Warrior Asia Diaz. Late diagnosis. Delivers baby while suffering pneumonia.
September 18, 2023 04:00 - 26 minutes - 23.8 MBAsia 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 refe...
Life without Trikafta, Will Corcoran (and Mom, "Bean")
September 11, 2023 04:00 - 34 minutes - 31.5 MBBean 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 ...
Night of Hope Keynote speaker, Jerry Cahill
September 05, 2023 04:00 - 32 minutes - 29.5 MBIf 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 journe...
Durhane Wong-Reiger, expert on access in low income Countries
August 28, 2023 04:00 - 50 minutes - 46.1 MBDr. 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,...
Rare Disease Advisory Council (RDAC) with Rep. Jason Morgan and Dr. Stephen Rapundalo
August 21, 2023 04:00 - 30 minutes - 28 MBThe 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, National Organization of Rare Disorders, RDII and a coalition of rare disease advocates (in Michi...
HealthWell Foundation - going out of the CF business?
August 14, 2023 04:00 - 27 minutes - 25.1 MBHealthwell 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 ...
Deliverer of CF Hope, Bob Emmelkamp
August 07, 2023 04:00 - 49 minutes - 45.4 MBYou 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,...
Author, Melodie Ramone
July 31, 2023 04:00 - 35 minutes - 32.6 MBMelodie 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...
Romance and CF
July 17, 2023 04:00 - 30 minutes - 27.9 MBWho 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 thei...
The Crossing for CF: On Location (West Palm Beach, Fla.)
July 10, 2023 04:00 - 49 minutes - 45.7 MBThe 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 a...
Clement and Travis - a love story about caregiving
July 05, 2023 04:00 - 34 minutes - 31.6 MBThis 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 ar...
Lisa Bentley - A Canadian powerhouse athlete
June 26, 2023 04:00 - 40 minutes - 36.7 MB54 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'...
Piper's Angels - A Dad and daughter love story
June 19, 2023 04:00 - 49 minutes - 45 MBCF 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 on...
Dr. Hector Gutierrez
June 12, 2023 04:00 - 41 minutes - 38.4 MBIn 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 ...
Surfer Jacob Venditti Lives Fearlessly with CF
June 05, 2023 04:00 - 21 minutes - 19.7 MBThe 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...
From diagnosis to Foundation: Laura Bonnell
May 29, 2023 04:00 - 40 minutes - 37.1 MBLaura 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://thebonnellfoun...
Attorney Beth Sufian (who has CF) talks social security
May 22, 2023 04:00 - 43 minutes - 39.6 MBThe 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 secu...
CF Realities in India
May 15, 2023 04:00 - 1 hour - 60.6 MBWe 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 t...
Being heard: CF and diagnosis when your African American
May 08, 2023 04:00 - 40 minutes - 36.9 MBIt'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 ha...
Medora Frei
May 01, 2023 04:00 - 35 minutes - 32.3 MBThe 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 ou...
CF Spouses: Zack and Farrel both have CF
March 06, 2023 05:00 - 43 minutes - 39.9 MBPeople 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 chang...
CF conversations held by a Michigan CF clinic!
February 27, 2023 05:00 - 29 minutes - 27.2 MBDoes 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 a...
CF Bridge of Hope
February 20, 2023 05:00 - 39 minutes - 36.1 MBImagine 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 proces...