Living With Cystic Fibrosis
136 episodes - English - Latest episode: 20 days ago - ★★★★★ - 20 ratingsLiving with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire
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Episodes
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...
Indubious
February 13, 2023 05:00 - 41 minutes - 38.2 MBIndubious. 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://t...
CF Warrior Project: Andy Lipman
February 06, 2023 05:00 - 36 minutes - 33.5 MBAlmost 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...
CF in Thailand: one on one with Dr. Haruthai Kamalaporn
January 30, 2023 05:00 - 30 minutes - 27.8 MBDr. 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 a...
GPS Vertex program: explained
January 23, 2023 05:00 - 35 minutes - 32.8 MBIf 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...
Cure Found MSU - Pre-medical students changing the World
January 16, 2023 05:00 - 21 minutes - 20 MB19 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 member...
Dental Health: An Informative, Fun Discussion!
January 09, 2023 05:00 - 39 minutes - 36.6 MBDid 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 ...
CF Vests Worldwide
January 02, 2023 05:00 - 35 minutes - 32.5 MBNot 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 ema...
All things Lung Transplant with Jen Weber
December 05, 2022 05:00 - 28 minutes - 26.5 MBAttorney 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 throug...
A Kid Again Adventures
November 07, 2022 05:00 - 30 minutes - 27.8 MBWe’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 wh...
Our first CF Podcast in Spanish
October 03, 2022 04:00 - 28 minutes - 19.5 MBDr. 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...
Costly transplants: don't go broke. More help...
September 12, 2022 04:00 - 33 minutes - 23 MBThe 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 additiona...
CF and Colon Cancer
August 22, 2022 04:00 - 45 minutes - 41.9 MBCF and Colon cancer, the risks are higher than you may be aware. Anna Payne is 35 years old and was diagnosed with stage 4 colon cancer a year ago.Anna is advocating to get colon cancer screening down to age 25 for people with CF. She’s in the fight of her life, and she's fighting for others. I hope this podcast reaches CF families that need to hear this critical message, and that it makes you an advocate. Anna's Foundation: http://bccfa.org Anna's email:[email protected] ...
CF and Colon Cancer with Anna Payne
August 22, 2022 04:00 - 45 minutes - 41.9 MBCF and Colon cancer, the risks are higher than you may be aware. Anna Payne is 35 years old and was diagnosed with stage 4 colon cancer a year ago.Anna is advocating to get colon cancer screening down to age 25 for people with CF. She’s in the fight of her life, and she's fighting for others. I hope this podcast reaches CF families that need to hear this critical message, and that it makes you an advocate. Anna's Foundation: http://bccfa.org Anna's email:[email protected] ...
Andrea and Alyson Hoffman
July 11, 2022 04:00 - 44 minutes - 40.4 MBAndrea 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 Edu...
Dr Jennifer Shedden
July 05, 2022 04:00 - 39 minutes - 35.8 MBDr. 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 info...
Wes Hawkins -CF with PRIDE
June 27, 2022 04:00 - 51 minutes - 47.5 MBAs 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 spea...
Wes Hawkins
June 27, 2022 04:00 - 51 minutes - 47.5 MBAs 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 spea...
My Mom, Lois Teicher and I talk all things CF!
June 20, 2022 04:00 - 23 minutes - 42.2 MBMy 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. M...
Laura Varon Brown
June 13, 2022 04:00 - 37 minutes - 34 MBFormer 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...
Amy Gaviglio
June 06, 2022 04:00 - 37 minutes - 34.3 MBCystic 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 o...
Dr. Johanna Zea-Hernandez
May 30, 2022 04:00 - 36 minutes - 49.4 MBThe 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-Hernande...
CF in Canada with Beth Vanstone
May 23, 2022 04:00 - 43 minutes - 59 MBCystic 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...
CF in Canada with Beth VanStone
May 23, 2022 04:00 - 43 minutes - 59 MBCystic 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...
Lost Women of Science
May 16, 2022 04:00 - 35 minutes - 32.2 MBI was on a zoom conference, I was bored. it was about using my zoom account, so it wasn’t extremely engaging. I continued to listen while I wandered away from the conference and was looking on the zoom page that recommended podcasts. One caught my eye…actually the word Cystic Fibrosis jumped out at me for obvious reasons. Then I saw the Lost women of science podcast and read the description. It was about science pioneer, Dr. Dorothy Anderson. I didn’t know anything about her, how coul...
Musician, Influencer, and Business Architect Marc Cotterill
May 09, 2022 04:00 - 51 minutes - 46.8 MBMarc Cotterill is a CF rock star if you ask me. He is from the United Kingdom, and has cystic fibrosis. Marc recently turned 40 years old. I love his Instagram presence because he is wonderfully direct about everything CF. You must check him out on IG. Marc lives with his girlfriend Emma and her young son, Noah. Marc is a Business Architect, he works with lots of different businesses to help them change and improve. When I started following Marc on social media I was hooked on his creat...
CF pioneer, program coordinator, Dee Aquazzino
May 02, 2022 04:00 - 51 minutes - 46.9 MBTo honor pioneers in CF during May, CF Awareness Month we are showcasing this pioneer. Dee Acquazzino was Pediatric Clinic Program Coordinator for 44 years as the CF at the Nebraska Regional CF Center in Omaha, NE. Dee was around when enzymes weren't encoded and saw the difference in absorption when the change was made. She talks about what she learned while working at the Nebraska clinic, and about her hope for the future. Hint: she sees a cure for CF in the future. For more informati...
Ukraine refugee and CF Mom Kateryna Koval's story
March 28, 2022 04:00 - 44 minutes - 40.6 MBThis is the story of one Ukraine family escaping war to save their daughter Anna, who has CF. Kateryna, husband Andrew and 4 year old daughter Anna were awakened by the sounds of bombing at 5:00am in Lviv, Ukraine. The reality of war was at their doorstep. They were terrified. Anna has CF and they knew they couldn't wait, they escaped that morning by getting in their car and waiting in the long line of traffic to escape. They were able to take Anna's CF vest and medications with them (u...
Dr. Ryan Thomas
March 21, 2022 04:00 - 37 minutes - 34.5 MBWe’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...
Salt in My Soul
March 07, 2022 05:00 - 55 minutes - 50.4 MBMallory Smiths book, Salt in my Soul was published posthumously by her mother, Diane Shader Smith (husband Mark) after she died from CF at the age of 25 years old. Smith died after a double lung transplant. So many people have read her book. I bought it years ago, but was never able to read it. I have a mental block, lots of CF books sitting on my shelf that I can’t read. I am living this life, I am raising not one but two girls with cystic fibrosis. I didn’t think I could handle any o...
Author Bijal Trivedi
February 28, 2022 05:00 - 55 minutes - 51 MBBijal 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 C...
CF Mom and Plus Size QVC model Rebekah Farley talks CF
February 14, 2022 05:00 - 40 minutes - 37.2 MBRebekah Farley is someone you may know from Instagram or the QVC channel where she is a Plus size model. Rebekah and her husband Craig,have a 6 year old daughter Madelynn with cystic fibrosis and a son Craig junior who does not have CF. CF Mom’s connect instantly, as we did. She lives inWest Chester Pennsylvania. Rebekah Farley aspires to be a voice over artist and published author. In 6 short years Rebekah has already used her voice to educate, fundraise and get involved in community serv...
Gunnar Esiason
January 31, 2022 05:00 - 36 minutes - 33.1 MBGunna Esiason is 30 years old and is living with cystic fibrosis. He inspires his peers in the CF community every single day. If you have seen Gunnar’s blog, follow him on twitter, listened to his podcasts or have read any of his articles in the paper you know he gets straight to the point. Gunnar uses his celebrity to educate and raise awareness about CF. Gunnar is the son of NFL great, Boomer Esiason, and now has a son of his own. He hasn’t slowed down at all. He is getting his second ma...
Future CF pulmonologists (thanks to a BF grant).
January 24, 2022 05:00 - 33 minutes - 30.4 MBThe 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 se...
The future of CF pulmonologists (thanks to a BF grant).
January 24, 2022 05:00 - 33 minutes - 30.4 MBThe 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 se...
Brett Bowman and Mom Kim talk transplant, blindness and Legacy.
January 17, 2022 05:00 - 36 minutes - 33.6 MBKim Bowman, and her husband Brian are two of the strongest people I know. Kim and I have been friends for a long time. We both had two children with cystic fibrosis…she had two boys, (Blake and Brett) and I have Molly and Emily. Blake only made it to his 14th birthday. He died from cystic fibrosis in January of 2015. It’s every parent’s nightmare, (whether or not your child has cystic fibrosis)…that your child should precede you in death. I don’t know how Kim got out of bed after Blak...
Dr. Heather Walter talks about CF and Post Traumatic Stress
January 10, 2022 05:00 - 53 minutes - 49 MBDr. Heather Walter is a CF Mom. I first heard Heather speak at a Mom's retreat in 2021 (via zoom). I was so impressed with her I asked her to speak on this podcast. She is the Director of the School of Communication at The University of Akron and a professor of organizational communication. Dr. Walter’s research is focused in the area of organizational communication and conflict, with a focus on health organizations and post-trauma health communication. She has published many journal art...
A transplant in the pandemic (for her son), Joan Galinkin 's story
January 03, 2022 05:00 - 32 minutes - 30 MBJoan 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 inform...
Steven Strickland, new lease on life!
November 29, 2021 22:30 - 39 minutes - 36.1 MBSteven Strickland is 28 years old and he's dealt with his own mortality more than he'd like. He was hoping to get a double lung transplant, but had to get rid of a deadly bacteria first (not once but 4 times). Then, after waiting years to be listed and almost dying....he said, "No." You'll hear why in this podcast. Today he's an employee at the Apple Store in Troy, MI and owner of his own company, Giant Helmet. Steven talks about the tough decisions he continues to make about transplant,...
Mums to Moms 2
November 22, 2021 05:00 - 41 minutes - 38.2 MB61 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 B...
Nutrition with MIchele Ciancimino, not mainstream high fat diet!
October 25, 2021 04:00 - 30 minutes - 27.5 MBMichele 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 trans...