Podcast Cystic Fibrosis terbaik (2024)

1
Rare Disease Ph.D. Beth Vanstone and Laura Bonnell 27:39

1d ago27:39

27:39

Are 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 th…

1
Private Patient Advocate offers you help 31:46

11h ago31:46

31:46

What is a Private Patient Advocate? Do you need one? Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey. She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthies…

1
Running a marathon with CF: Dylan Mortimer 35:10

7d ago35:10

35:10

Dylan Mortimer did the NYC Marathon. If you know him, you know that he had two double lung transplants. One in 2017 and one two years later in 2019. His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk, pre-transplant. It so touching as Dylan chairs his story with us. I appreciate al…

1
Partnership to Improve Patient Care: legislation explained! 43:51

30d ago43:51

43:51

Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand. They both work for the Partnership to Improve Patient Care, or PIPC (a coalition). Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is…

1
Heather Trammell: CF and finding your voice 37:53

1M ago37:53

37:53

Life with CF is different for everyone. We have a lot of the same challenges, but we do grow with the disease differently. Heather Trammell, CF Mom to 7 year old Charlie is married to Christopher, (for 13 years now). Heather is a legal assistant in the compliance department at Credit Acceptance. Heather has so much CF Mom wisdom. I am glad to call …

1
Touraj Manshadi falling through the gaps in health policy 36:41

1M ago36:41

36:41

We’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 rar…

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CURE FOUND MSU EXPANDS TO UM 39:10

2M ago39:10

39:10

I always tell this group of undergrad students that they are our future, and that makes the future look bright. Atef Choudhury and Naim Mashni are incredible people and students. They're both Seniors at Lyman Briggs College -- majoring in Human Biology. They're minor is in business and they're on the pre- med track. Atef and Naim are the co-founder…

1
Laura Bonnell - From news reporting, to CF and beyond. 31:04

2M ago31:04

31:04

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 Educatio…

1
Sorcha's CF journey: from diagnosis to addiction and discovery 44:28

2M ago44:28

44:28

We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988. Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her…

1
My brother and me! Rare, a bit of CF & COTA! 41:11

3M ago41:11

41:11

In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children’s Organ Transplant Associati…

1
Diary of a Dying Girl, Diane (Mallory) Shader Smith 27:26

4M ago27:26

27:26

Diane Shader Smith’s daughter Mallory died from complications of cystic fibrosis 6 years ago. She was 25 years old. Diane initially published her daughter’s diary, "Salt in My Soul". This book gave insight into how Mallory was feeling during her CF fight. Her deepest thoughts, and life lessons. Diane Shader Smith is now releasing a second book on b…

1
Special Insurance for CF families (and others) in MI 33:29

4M ago33:29

33:29

Children’s Special Health Care Services (CSHCS): Have you heard of it? In the simplest terms, it is defined by the need for specialty care required for your child. It’s not a Medicaid program. Access to the program has nothing to do with your household income. The program has a lot of benefits. CSHCS covers transportation that can include airfare a…

1
Remembering Matt McCloskey of Take a Breather 37:29

5M ago37:29

37:29

Shortly 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 M…

1
The Fearless Vagina: Ellen Dolgen 1:00:06

5M ago1:00:06

1:00:06

As people with cystic fibrosis live longer, with a life expectancy currently at about 56 years old, many women with CF will be going through menopause. I recently spoke to doctors at a hospital gathering, and recommended they speak to women with CF about menopause. They agreed. It's time. There is so little discussion and education about women and …

1
Dr. Caleb Bupp, Rare Genius (in our opinion) 43:39

6M ago43:39

43:39

Dr. Caleb Bupp. In my opinion. A scientific star. He is a most humble human, but has every right to brag, but he never would. I do believe he's a genius. You will love this podcast. We talk about rare disease, his family and how he discovered and helped families who had no rare disease answers, until they met him! An absolute scientific rock star. …

1
Cambrey Vasconez White - rare mutations 38:33

6M ago38:33

38:33

Cambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar struggles. Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada. These two women connected, as you’ll hear, because their sons share the same mutation. Row…

1
Brandi Berry, Chidlren's Special Health Care Services Prgrm 39:34

6M ago39:34

39:34

Did you know most states have programs for CF families, and they don’t have to do with your income? Michigan has one of the best programs in the Country. It’s called Children’s Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about it. Brandi Berry, LLMSW is the Program Coordinator of t…

1
Dr. Bhanu Jena, another CF modulator on the horizon? 35:36

6M ago35:36

35:36

A new CF modulator could be on the horizon. Professor Dr. Bhanu Jena is exciting to tell us all about it. Dr. Jena was born in a small town in Odisha, India. He got his love for science and medicine from his father and grandfather. He majored in Chemistry, Zoology, and Botany at BJB College in Bhubaneswar, Odisha, India, He got his masters in zoolo…

1
The Final 10 percent 38:03

7M ago38:03

38:03

Approximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease. Current modulator drugs help more common CF mutations. Emily Kramer Golinkoff is one of the people who doesn't have a CF modulator that will help her. Her Foundation, Emily's Entourage, is a l…

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Dr. Mitch Drumm - CF Pioneer (and hero to CF community) 44:14

7M ago44:14

44:14

Living legends. One of them is Dr. Mitch Drumm. He was part of the team with Dr. Francis Collins who discovered the gene that cause CF. They were all at the University of Michigan. You’ll hear the connection Laura and Mitch have, and they didn’t know it until this podcast! Dr. Drumm is a living CF hero. Dr. Drumm earned his doctoral degree while in…

1
Dr Ryan Hadley - Lung Transplants 27:38

7M ago27:38

27:38

Do you know what is needed before you have a lung transplant? Or even how it works? More and more adult CF clinics are explaining the details to adult patients, but if you're a CF parent, there is a lot you may not know. We welcome Dr. Ryan Hadley. Dr. Hadley is at Corewell health in Grand Rapids. He is an assistant Profession of Medicine in pulmon…

1
Laura and Beth talk about what makes a Foundation work! 40:50

7M ago40:50

40:50

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 cons…

1
Rabbi Moskowitz, embracing the Queer community 58:41

8M ago58:41

58:41

He’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 an…

1
CF in Brazil, and one outstanding advocate 57:39

8M ago57:39

57:39

We’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…

1
Gut pain and CF, Dr. Jorge Machicado 23:46

8M ago23:46

23:46

So 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. Mach…

1
Win Like A Girl - Maureen Electa Monte 49:45

8M ago49:45

49:45

Maureen 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 St…

1
Mindfullness and CF with Aliyah Novelli 30:52

8M ago30:52

30:52

Aliyah 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 …

1
CF Mom Vicky Maldonado talks Ultra Rare CF mutations 38:14

9M ago38:14

38:14

Canadian, 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…

1
All of Us - Science, Innovation and YOU. 39:20

9M ago39:20

39:20

A 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 …

1
CF Trust, U.K. with Belinda Cupid 40:23

9M ago40:23

40:23

(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 Advis…

1
Healthwell again open to CF patients 19:48

9M ago19:48

19:48

This is our third podcast with Alan Klein, the Chief Development Officer Healthwell. As a reminder Healthwell was paying about $25 million each year for CF co-pays in therapeutics. But because of the lack of funding from their corporate sponsors they stopped helping existing patients and couldn’t help new applicatns with their CF bills. Healthwell …

1
The extraordinary, Nick Kelly. 44:20

10M ago44:20

44:20

(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…

1
Karen McEwan and Laura bond over chronic illness 45:59

10M ago45:59

45:59

Karen McEwan’s daughter, Elana, is 20 years old. It’s been a complex journey from birth to today. Elana suffers from a rare, incurable disease called Primary Ciliary Dyskinesia (PCD). This is the first podcast that is not about cystic fibrosis specifically, although you will see the connection. It’s about chronic illness and Mom’s connecting and pa…

1
Two Salty Okes, Rena Barrow's story 40:39

10M ago40:39

40:39

Rena Barrow has two kids with CF, Jarrod is 22 and Jahsir is 3 years old. Over the years she’s witnessed a discrepancy in care for people of color. Even after her 22 year old son was diagnosed, doctors weren't sure her newborn baby had CF, They told her, "Maybe it was sickle cell." She fought until her son Jahsir was properly diagnosed. The delay i…

1
Dr. Susanna McColley talks health equity 54:06

10M ago54:06

54:06

I am excited that all of you will get to meet Dr. Susanna McColley!!!! I was so impressed with her commitment to CF and her incredible medical and life knowledge. Dr. McColley works to promote equitable diagnosis and treatment in cystic fibrosis. As a white person, Dr. McColley talks about all that white privilege brings, and what we must remember …

1
CF Woman climbs Kilimanjaro (Caroline Heffernan) 44:50

11M ago44:50

44:50

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, a…

1
Queen Kwong, AKA Carre Callaway -rock n roll and CF 50:49

11M ago50:49

50:49

Carre Callaway (Queen Kwong) tours in the U.S., U.K. and wherever her music takes her. Carre ended her tour and was in Los Angeles when we talked with her on this podcast. She talks about how music was a coping mechanism for her chaotic life. When Carre was 17 years old, a chance meeting with Trent Reznor of Nine Inch Nails, turned her life around.…

1
Dr. John Schuen, life at the Grand Rapids CF clinic 31:49

1y ago31:49

31:49

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

1
Bernie Martin - CF Mum in Ireland 40:06

1y ago40:06

40:06

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

1
Newborn Screening, will you be diagnosed with CF? 43:41

1y ago43:41

43:41

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 …

1
The fate of Healthwell, what is their future? 27:32

1y ago27:32

27:32

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 insuran…

1
CF in Israel, during a war... 44:19

1y ago44:19

44:19

(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 medica…

1
Rory Tallon, Dating someone who also has CF. 30:07

1y ago30:07

30:07

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…

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Dr. Jennifer Taylor Cousar - our CF super hero doctor 36:06

1y ago36:06

36:06

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

1
Entrepreneur Emily Lyons success in the midst of tragedy 40:30

1y ago40:30

40:30

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

1
Entrepreneur Marten DeVlieger. 44:49

1y ago44:49

44:49

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 w…

1
Rory Tallon, CF Ireland 48:16

1y ago48:16

48:16

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

1
CF Warrior Asia Diaz. Late diagnosis. Delivers baby while suffering pneumonia. 26:01

1y ago26:01

26:01

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 leav…

1
Life without Trikafta, Will Corcoran (and Mom, "Bean") 34:25

1y ago34:25

34:25

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 volunt…

1
Night of Hope Keynote speaker, Jerry Cahill 32:12

1y ago32:12

32:12

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

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