Shows
Living With Cystic FibrosisRare Disease Ph.D. Beth Vanstone and Laura BonnellAre titles important? As a rare disease parent, we think you're worthy of a Ph.D. Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done.As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old. Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is thanks to her efforts.Laura Bonnell and Beth Vanstone have been advocating a total of more than 50 years co...2024-11-2527 minLiving With Cystic FibrosisTouraj Manshadi falling through the gaps in health policyWe’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell.Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American’s thinking that medically everything is better in Canada, but that’s not true. Many countries around the globe are struggling with the high cost of drugs for Rare...2024-10-1436 minLiving With Cystic FibrosisLaura and Beth talk about what makes a Foundation work!Everyone always asks me "What does it take to run a Foundation?" So I thought I would explain some of the different aspects of funny and challenging parts of running a Foundation.Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is all about!Please follow us on social media!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:2024-04-2240 minLiving With Cystic FibrosisCF in Brazil, and one outstanding advocateWe’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 - Brazilian Institute of Cystic Fibrosis Care, has worked for nonprofits for the last 8...2024-04-0857 minLiving With Cystic FibrosisCF Woman climbs Kilimanjaro (Caroline Heffernan)Caroline Heffernan talks to CF families about all sorts of things, employment, family support, housing issues, cross infection, fertility…you name it. Caroline talks all things CF. As someone with CF she knows what she’s talking about. She’ll even discuss End of Life with CF families. Caroline volunteers for CF Ireland.Caroline, is 53 years old, and pushes the power of exercise. She’s a cycler, she’s ran a marathon on 2008, did the Barcelona Ironman in 2018, and in July of this year climbed Kilimanjaro. She assisted in the Guinness World Record Attempt for the Highest Har...2024-01-1544 minLiving With Cystic FibrosisEntrepreneur Emily Lyons success in the midst of tragedyEmily Lyons is not yet 40 years old (she's 37 years old) and is a multimillionaire. But her life has not been easy. Her story is incredible, she's actually writing a book about it. She dropped out of high school at 16 years old, worked as a nanny for a bit in Australia, modeled and now, well, she’s a multimillionaire running four companies. She was recently featured in Forbes magazine for her Femme Fatale staffing and marketing business. She will tell us about all four of her companies. She talks about grief, losing her sister to CF, her Mom to cancer, and th...2023-10-0940 minLiving With Cystic FibrosisEntrepreneur Marten DeVlieger.Please subscribe, rate our podcast and comment. thank you.Marten De Vlieger do you know what he did or who he is? I am excited to let you know. He is an adventure and sports athlete. He’s 41 years old with CF. Marin worked with HillRom, which is now Baxter, to make the Monarch Airway Clearance System. He worked on it for 10 years. He still works with Baxter doing social media and some public speaking. So we’re glad to have him on our podcast. He is also a spokesperson for Polaris.His energy will inspire...2023-10-0244 minLiving With Cystic FibrosisRory Tallon, CF IrelandPlease consider subscribing, rating and commenting on our podcast (Spotify). But you can hear our podcasts anywhere.We’re traveling 9 hours by plane for this podcast to the lush green grass of Dublin, Ireland. You may want to pour yourself a Guiness for this podcast if you’re listening at home. If you’re walking while listening then just picture yourself surrounded by the pubs in Dublin or out in the country with flower shops and open land. A beautiful place indeed. This is where we find Rory Tallon. He’s 51 years old with CF and he is a patie...2023-09-2548 minLiving With Cystic FibrosisCF Warrior Asia Diaz. Late diagnosis. Delivers baby while suffering pneumonia.Asia Diaz is 27 years old and has CF. As an African American woman she was one of the many people diagnosis late in her life because some physicians believe incorrectly, that CF is a genetic disease that mainly impacts the white race. For this reason Asia was diagnosis late in life. She tells her story of life long symptoms. Her late diagnosis leaves her exhausted and sick.Asia wanted to have children with her husband, Danny. Even after she was diagnosed her doctor still did not refer her to a CF clinic. So when...2023-09-1826 minLiving With Cystic FibrosisDurhane Wong-Reiger, expert on access in low income CountriesDr. Durhane Wong-Rieger is the President and CEO for the Canadian Organization for Rare Disorders. She is involved and Chair to many committees and organizations. She is also an author, lecturer and trainer. She is the perfect person to talk with about making healthcare a level playing field for all. As you know we have interviewed so many people on this podcast talking about the challenges in different countries to medications. In Egypt the Ministry of health doesn’t recognize the disease, CF families there don’t have the basics like liquid vitamins for their infants. In Thailand, it’s the s...2023-08-2850 minLiving With Cystic FibrosisDeliverer of CF Hope, Bob EmmelkampYou will want to learn more about Bob Emmelkamp after this podcast, I promise!I feel like Bob is everywhere and supportive of everyone.Without a DNA connection to cystic fibrosis, Bob Emmelkamp became a lifelong CF fund-raising volunteer in 1976, when he helped put on a high school dance marathon where proceeds benefited the CFF. Since then, he has raised hundreds of thousands of dollars to advance research for a cure for CF, spreading the word and explaining the latest CF research news, and personally funds grants to the labs of some of the top...2023-08-0749 minLiving With Cystic FibrosisThe Crossing for CF: On Location (West Palm Beach, Fla.)The CF community is a small one. It’s made up of 40,000 people with the disease in the U.S. When you add two parents to the mix that’s 80,000 parents, then there are grandparents, siblings, Aunt and Uncles, friends and you get the picture. We have a small, tight knit community.Laura Bonnell thought it was important that the Bonnell Foundation reach out to volunteer for the Pipers Angels Crossing for CF event. It was the weekend of June 23rd, 2023. It’s so important that we support one another.This podcast playfully shows the camarader...2023-07-1049 minLiving With Cystic FibrosisClement and Travis - a love story about caregivingThis is a love story about two people passionate about entertainment, writing and each other.In 2016 Clement ‘Clem’ Souyri, moved from Versaille, France to the United States. Clem is a lawyer who specializes in entertainment law. His career path landed him in the orbit of Travis Flores. Travis is a screenwriter and children's book author, and he has Cystic fibrosis. Travis is living because of his third double-lung transplant. Travis and Clem have been together for more than 6 years and are now facing a new challenge. Travis’ is in end stage of renal disease. Thank...2023-07-0534 minLiving With Cystic FibrosisLisa Bentley - A Canadian powerhouse athlete54 years ago when Canadian, Lisa Bentley was born, enzymes weren't even in pill form. Diagnosed at age 20, Lisa was already in the midst of figuring out her life as a teacher and later, a world famous triathlete. She had 11 IRONMAN victories on several continents with at least one IRONMAN victory each year from 2000 to 2007. She is an author, coach, wife, and trainer. She talks about how mental strength and positive talk are everything, and it's important to remember who you are and why you're doing what you do.She brings us so much wisdom in this podcast. Sh...2023-06-2640 minLiving With Cystic FibrosisPiper's Angels - A Dad and daughter love storyCF in the family. Making it your life's purpose. Then The Crossing for cystic fibrosis, from the Bahamas to Florida was born. Travis' parents didn't know they had three children with CF. When Travis's daughter Piper was always sick, CF didn't occur to him. Then his sister LeeAnn was diagnosed with CF at age 40. Then another sister. And that's when Travis decided to have Piper tested, and then himself. His story is almostunbelievable. You will find his journey inspiring, and once you hear about all he is doing for the CF community, you'll...2023-06-1949 minLiving With Cystic FibrosisDr. Hector GutierrezIn January, The American Thoracic Society (ATS) held a webinar about the challenges facing CF families in low-income countries. Drs. Samya Nasr and Grace Paul were key participants in the webinar. Two doctors who have been featured on this podcast. This is where I first saw I Dr. Hector Gutierrez.Dr. Gutierrez is the Raymond K. Lyrene Chair, Professor, and Director of the Division of Pediatric Pulmonary and Sleep Medicine at the University of Alabama at Birmingham (UAB). Dr. Gutierrez is native to Chile, where he did medical school and pediatric residency. He did his subspecialty training a...2023-06-1241 minLiving With Cystic FibrosisCF in Canada with Beth VanstoneCystic Fibrosis awareness month continues with today's show. In this episode, Host Laura Bonnell is joined by frequent podcast collaborator Beth Vanstone. Beth, a Canadian talks about the state of health care in Canada.We start with a brief history of how CF drugs and treatments are approved in Canada, including Kalydeco, Orkambi, and Trikafta. The Canadian government was ready to install new regulations that would have had the unintended side effect of Trikafta not being available there.Many Americans assume that Canadian health care coverage is better. Beth gives us an honest look at the...2022-05-2343 minLiving With Cystic FibrosisAuthor Bijal TrivediBijal Trivedi is a journalist and an author. She spent 8 years writing the book, Breath from Salt. It's an in-depth look at how parents with CF children banded together to start what is now the Cystic Fibrosis Foundation. Trivedi weaves a beautiful story of all the players, from CFF President Bob Beall, to Joe and Kathy O'Donnell's involvement and all the other parents intertwined along the way. The scientists contributions are worked into the book beautifully. You'll learn things about CF you may have never heard before, and you'll be cheering on those scientists. Trivedi recently became Senio...2022-02-2855 minLiving With Cystic FibrosisMums to Moms 261 year old Lorna McEwan lives in Saskatchewan, Canada where she is the oldest person living with cystic fibrosis. She's a well known advocate, working to help CF families. She lost two brothers to the disease and her son. How can she even get out of bed in the morning? Is that what you're thinking? Well wait until you meet her in this podcast! She will inspire you, and lift you up. She's an incredible woman sharing her journey with us in the Mums to Moms podcast(Beth Vanstone, Laura Bonnell and Patti Tweed). It's all about empowerment!For mor...2021-11-2241 minLiving With Cystic FibrosisMums to Moms: talking CF from Canada to the U.S.Cystic Fibrosis Moms, who have never met, have a common bond: they know what a disease does to their child(ren), marriage and to their mental health. Laura Bonnell, Beth Vanstone and Patti Tweed all have one or more kids with the disease. The women came together to discuss all the challenges Moms (and Mums in Canada) face. Their hope is to get Mom's talking to each other about all the challenges they face. We will feature other Moms and clinical experts too. We want your input so please shoot us an email: thebonnellfoundation@gmail.com Thank you.Fo...2021-07-0528 minLiving With Cystic FibrosisCF Get Loud, the Canadian perspective.Beth Vanstone talks about how a CF diagnosis thrust her into the world of advocacy. The two Moms (Laura and Beth) quickly find they have so much in common, from victories to challenges, even though they're living in different county's.
Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:V...2020-09-1041 min