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eCysticFibrosis Review

eCysticFibrosis Review

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Expert insight and analysis providing information directly relevant to cystic fibrosis care, through topic-focused newsletters summarizing the peer-reviewed literature and accompanying podcasts to illustrate how to apply that information in the clinic. Hosted on Acast. See acast.com/privacy for more information.
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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…
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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 …
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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…
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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 …
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(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…
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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 …
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(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…
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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…
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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…
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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 …
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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…
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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.…
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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…
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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…
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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 …
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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…
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(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…
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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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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…
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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…
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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…
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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…
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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…
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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…
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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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Dr. 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 o…
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The 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.…
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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…
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You 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 h…
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Melodie 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 th…
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Who 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 wit…
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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 reac…
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This 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 h…
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54 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…
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CF 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 wh…
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In 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, Profe…
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The 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, th…
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Laura 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 th…
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The 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 i…
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We 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 peopl…
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It'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 …
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The 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 …
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People 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 sho…
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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 …
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Imagine 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 Bonne…
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Indubious. 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 year…
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Almost 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 h…
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Dr. 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 s…
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If 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 m…
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19 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 motiva…
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