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!

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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 and radically progressive advocate for trans rights and a vocal ally for LGBTQ inclusivity.

Rabbi Moskowitz received three Ultra-Orthodox ordinations while learning in the Mir in Jerusalem and BMG in Lakewood, NJ. He is a Wexner Field Fellow, Senior Rabbinic Fellow at the Hartman Institute, and the author of Textual Activism, Graceful Masculinity, and Seasonal Resistance. His newest book, Covenantal Allyship, will be available this year. Rabbi Moskowitz’s writings can be found at www.rabbimikemoskowitz.com

We met in person at Temple shir Shalom in West Bloomfield. Rabbi Moskowitz was speaking at the synagogue and wishing to always be an ally for the Queer community, I went. The CF community, every community, has a queer population and that’s why I felt it was important to talk about this.

To reach Rabbi Mike Moskowitz www.cbst.org
To learn more about him and to order his books https://www.rabbimikemoskowitz.com

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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, 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 years. He graduated in journalism and marketing. Gabriel has MBAs in Digital Marketing and Project Management and is currently a master’s student in Communication Sciences at the University of Porto, Portugal.

Gabriel is a patient advocate for people with cystic fibrosis and rare diseases in Brazil. He’s been doing this for the past two years….and he’s only 31 years old! To learn more about CF in Brazil visit the Unidos pela Vida website (Vernonica Stasiak’s Organization and where Gabriel works). www.unidospelavida.org.br

Thank you to Beth Vanstone for producing this podcast. Beth is a CF advocate in Canada. Her daughter Madi has CF. She can be reached at: beth@thebonnellfoundation.org

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Please consider making a donation: https://thebonnellfoundation.org/donate/
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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. Machicado earned his medical degree from Universidad Peruana Cayetano Heredia in Lima, Peru, and received a Master of Public Health at Johns Hopkins Bloomberg School of Public Health. Dr. Machicado’s research focuses on epidemiology and clinical trials in pancreatic disorders. He has authored over 70 peer-reviewed articles, most of them on pancreatitis and pancreatic cysts. He has been recently selected as a FORWARD scholar by the American Gastroenterological Association, which aims to support physician scientists and future leaders in GI from under-represented populations. The Bonnell Foundation gave Dr. Machicado and his team a five thousand dollar grant to help study gut pain in people with CF. It’s a long pilot program, similar to a clinical trial. This is a feasibility study.

To get a hold of Dr. Machicado for this study: machicad@med.umich.edu

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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 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 team.

Since then, Maureen has grown her personal brand and is an author. Her first book, Destination Unstoppable, is fabulous. It teaches the reader how to be a successful team player. As Maureen knows, as I have told her for years, if she could get in a room with the Detroit Lions, they would get to the Super Bowl and win.

In her next book, Win like a Girl, Maureen talks about the framework needed to help coaches and parents develop powerful girls who can overcome adversity and expand their comfort zone. The book’s message is powerful and empowering for everyone, including the CF world. As parents and persons with CF, we must always advocate for ourselves and the ones we love.

Meet Maureen Monte: https://maureenmonte.com/five-fears/
Coaching example, one on one: https://www.youtube.com/watch?v=hCu4-It9JFM
Follow Maureen on social media: https://twitter.com/maureenemonte
Facebook: https://www.facebook.com/profile.php?id=100004767524903
Linkedin: https://www.linkedin.com/in/maureenmonte/

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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 her mindfulness program this year. It’s 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 Pennsylvania. She also got a bachelor’s degree in Fine Arts in dance at Temple University.

Aliyah lives with her husband Mark and Mr. Boots (her polydactyl cat). They also have a Cavapoo dog named Sammy.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
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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 white”— his parents are Canadian-born Latinos from Ecuador. Though CF affects all races and ethnicities, there’s still a common misconception among health-care providers that it is a predominantly white disease.”

Vicky and her husband were devastated to learn that their son would not have access to the life-changing and life-saving drug Trikafta because he has two rare mutations. Due to small populations in rare mutations, clinical trials are often not feasible. Other countries are using in vitro data to provide access to those with rare and ultra-rare mutations while approximately 200 Canadians with CF are being left behind.

This is not a new problem in Canada, the pathway to access to new and innovative therapies is fraught with challenges. A broader regulatory approach is needed to support implementation of the National Strategy for Drugs for Rare Diseases, and cystic fibrosis is an example of this need. There are hundreds of disease-causing mutations, some with only a handful of patients worldwide. Health Canada can improve access to rare disease medications like Trikafta by using patient and laboratory in vitro data and by developing a regulatory model that permits bulk approvals of gene mutations that can respond to precision medicines like Trikafta.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.

Please consider making a donation: https://thebonnellfoundation.org/donate/
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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 databases in history. This would allow resources to accelerate precision medicine for all populations. This is critical to the future of our planet and population in my opinion…but it’s clearly why they called the program: All of Us. To succeed and to properly represent our population…science needs All of Us. Josh is an amazing human, and I am honored to feature him in this podcast.

Dr. Denny has been involved since the program’s inception. He was a member of the NIH Precision Medicine Initiative Working Group of the Advisory Committee to the Director, which developed the program’s initial scientific blueprint. He then led the program’s initial prototyping project and the All of Us Data and Research Center. Josh was named CEO of All of Us in January 2020. Before joining NIH, Dr. Denny was a practicing physician and held several leadership positions at Vanderbilt University Medical Center. At Vanderbilt, he led discovery and implementation projects in precision medicine, including clinical pharma-co-genomics and Vanderbilt’s DNA biobank. Dr. Denny was a pioneer in the use of electronic health records for genomics studies, including the initial descriptions of phenome‐wide association studies and phenotype risk scores.

To get involved with All of Us, visit this website: https://www.joinallofus.org/

As I state in the podcast, I joined All Of Us, and gave over my genetic material and answers to medical questions.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.

Please consider making a donation: https://thebonnellfoundation.org/donate/
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This is our third podcast with Alan Klein, the Chief Development Officer at 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 applicants 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 fear when this happened in August of 2023. The CF Vitamin and Supplement Fund did remain open, but there was also concern it may shut down. With 40 to 45 percent of the CF population being helped by Healthwell, this was scary for many. The Bonnell Foundataion was referring people to Healthwell if we couldn’t meet patients’ financial requests. It was concerning for nonprofits like mine and many others who worried we could be overwhelmed with financial requests because Healthwell no longer had funding.

The reason for this podcast is because the program has opened up, however, not everyone knows it’s back open to people with CF.

To find out more about the Healthwell Foundation: https://www.healthwellfoundation.org

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

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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 videos you won’t be able to stop. Trust is something you must start from within, to trust externally. First trust yourself.

Nicholas has done Ted X talks…Healing through the Human Experience. He also does motivational videos where he talks about fearing the truth. Everything Nicholas talks about is not CF, it’s about life. Did CF play a part in his internal strength, lets find out….

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
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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 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 younger daughter, Madison who does not have a rare disease. Karen is a strong person sharing her story, and the challenging journey she’s been on with her daughter.

How did we meet? My brother’s wife, Lisa connected us. We were both advocating and Lisa Teicher thought we would enjoy hanging out. We met in a Starbucks the first time and didn’t stop talking. Moms who have kids with a chronic illness have so much in common. We bonded over chronic illness.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
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Thanks to our sponsors:
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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 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 to food. Rena is motivated by her personal and avoidable situation to raise awareness so others don’t go through what she did.
Their experience with diagnosis of CF is sadly still too common. Between 2001 and 2005 they tried to figure out what health condition their son had. They were accused of not feeding him or caring for him properly prior to his diagnosis. Rena is speaking out for black, indigenous and people of color or BIOPIC.

To get in contact with Rena: twosaltyokes@gmail.com

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Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
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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 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 white, are still treated differently. Dr. McColley discusses this in today’s podcast.

Dr. McColley’s biography:
Susanna A. McColley, MD, FAAP, ATSF is a pediatric pulmonologist whose research focuses on improving the health of people with cystic fibrosis though understanding health disparities, improving methods for screening and diagnosis, and testing new treatments. She leads a multidisciplinary team of clinicians, community members and public health professionals to improving timeliness and equity of CF newborn screening. She is passionate about supporting the next generation of researchers, especially those underrepresented in the biomedical research workforce. She directs a summer research program for students from minority-serving institutions in Chicago and co-leads the Faculty Development Core for Northwestern University Recruitment to Transform Under-Representation and achieve Equity (NURTURE), the Northwestern University Faculty Institutional Recruitment for Sustaining Transformation program through the NIH Common Fund.
Dr. McColley is Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago; Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine; Associate Clinical Director for Child Health and Director of the TL1 Multidisciplinary Program in Child and Adolescent Health at Northwestern University Clinical and Translational Sciences Institute; and Editor-in-Chief for Pediatric Pulmonology. Her research is funded by the Cystic Fibrosis Foundation, the National Institutes of Health, the Center for Disease Control and Prevention, and The Legacy of Angels Foundation.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
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Thanks to our sponsors:
Vertex: https://www.vrtx.com
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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, and pushes the power of exercise. She’s a cycler, she ran a marathon in 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 Harp Concert in aid of CF Ireland. She also reminds everyone with CF to think about what your Kilimanjaro is. It could be just climbing the stairs. Don’t compare yourself to anyone. You do you.

She lives in Ireland with her husband Francis, kids Jamie and Anna and grandson Milo.

Find out more about Caroline’s trek up Kilimanjaro and the fundraising for CF Ireland: https://highestharpconcert.com/
Link to the story of Triona Priestly, and singer Ed Sheeran’s serenade to her: https://www.billboard.com/music/pop/ed-sheeran-serenade-dying-fan-7760540/
CF Ireland: https://www.cfireland.ie
Harp fundraising: https://www.justgiving.com/fundraising/highest-harp#:~:text=The%20Highest%20Harp%20Concert%20Team,19%2C340ft%20on%20Mount%20Kilimanjaro
Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
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Viatris: https://www.viatris.com/en

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. 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 didn’t think she could have CF), and amid a messy divorce with Wes Borland of Limp Bizkit. She talks about being abandoned by her husband and friends after the diagnosis. This is her first in-depth discussion about life with CF.

Carre talks about how she went into survival mode and being in what felt like a hopeless situation. Carre embraced being an imperfect human and figured out how to thrive inspired by her massive loss.

Carre has released three records, and is in the process of writing a book about life with CF. Life with CF as a punk rock, Indie rock singer with hemoptysis (coughing up blood) happening in between or during gigs.

Carre is in a loving relationship and doing well. Check her out on Instagram!

Follow Queen Kwong: https://www.instagram.com/queenkwong/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
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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, in sleep medicine as well. Why did you decide to become a doctor, and specifically why did CF draw you in?

I wanted to do this podcast to highlight all the great things that you and Dr. Susan Millard are doing and Dr. Johanna Zea-Hernandez. Overall how many patients do you have in the pediatric department and what are you seeing since the latest modulator came about in 2019?

(Laura did have a cold through this podcast).

——————————–

John Schuen serves as division chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s Hospital. Schuen provides medical care of children with complex pulmonary, respiratory related problems and sleep disorders. He also serves as medical director of the pediatric sleep laboratory, center director of cystic fibrosis care center at Helen DeVos Children’s Hospital. He is board certified in pediatric pulmonology and sleep medicine.

After matriculating from Albion College, Dr. Schuen earned his medical degree from Michigan State University College of Human Medicine. He completed his residency in pediatrics at the Cleveland Clinic and fellowship in pediatric pulmonology & sleep medicine at Johns Hopkins Hospitals.

Dr. Schuen has been a member of numerous professional organizations including the American Academy of Pediatrics, the American College of Chest Physicians, the American Academy of Sleep Medicine, and the American Thoracic Society. He serves on statewide and national committees devoted to advancing lung health in children such as the Cystic Fibrosis Newborn Screen Task Force as well as the Center Committee of the Cystic Fibrosis Foundation. The CF Care Center is also a member of the Cystic Fibrosis Learning Network as well as the Therapeutic Development Network. The Helen DeVos Children’s Hospital CF Care center also collaborates with Michigan State University to create and foster new research in their new Cystic Fibrosis Translational Research Program.

The Pediatric Pulmonary section recently launched the system’s first Pediatric Pulmonary fellowship program and currently has two wonderful fellows. He chaired the Cystic Fibrosis Foundation’s Center Committee for two consecutive terms during the pandemic and is ex officio of Spectrum Health West Michigan’s Medical Group Committee of the Board. He has published multiple original journal articles, book chapters, reviews as well as delivered dozens of invited talks devoted to advancing the state of the art in child’s lung and sleep health.

Helen DeVos Children’s Hospital: https://www.spectrumhealth.org/for-health-professionals/referrals-and-consultations/pulmonary-critical-care-and-sleep-medicine/cystic-fibrosis-clinic

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
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Viatris: https://www.viatris.com/en

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 little lady with CF, who she describes as her muse, her strength, her drive, her everything!

Bernie has written about the challenges facing CF families on her blog My Little Miss Salty, and she has written for The M Word and MummyPages. She has worked on a voluntary basis as a CF patient advocate in CHI Temple Street and as a campaigner during the #YesOrkambi campaign in 2016/17, with the support of Rothco, the advertising agency she worked with at the time. She has been a speaker at the Cystic Fibrosis Ireland Conference and at the new parent information day in Temple Street, as well as featuring in Humans of Dublin by Peter Varga.

Bernie and her daughter, Eva, recently collaborated with the University of Notre Dame in the 100th episode of their long running series, ‘What would you fight for?’ In this case, the fight is for new Cystic Fibrosis treatments. Bernie and her husband Dave live in Dublin, Ireland.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 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 in 2007.

Our experts have the answers. Dr. Samya Nasr is a pediatric pulmonologist at the University of Michigan, and she is the Coordinator for the NBS since 2007. Mary Kleyn is an epidemiologist for the NBS. She has been with the Michigan Department of Community Health since 2008.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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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 certain request for funds. Approximately 40 to 45 percent of the CF community is helped by Healthwell. Healthwell used to pay about $25 million each year for CF co-pays in therapeutics but because of the lack of funding from their corporate sponsors, Healthwell had to close their CF Treatment Fund to new and re-enrolling patients. There is a lot of fear since this happened in August, but the CF Vitamin and Supplement Fund, we were told would remain open, but now that may also disappear in 2024.

This podcast answers all your questions.

Connect with Healthwell: https://www.healthwellfoundation.org
The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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Israel is at war. The emotional toll on families in Israel and Palestine is unimaginable.

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 children. Noya is almost 14 years old, their sons Yahav is 11 years old and Segey is 7.5 years old.

Nirit takes us on her daily journey of running to the safe room with her family when sirens blast, to her hesitation to leave her house. She gives us a very day to day look at what life is like during a war. Nirit told me that she held it together during this interview so that she could describe all that is happening around them, but she said it is very hard to hold it together, but she must. There is no time to process she says, you just keep going.

We reached out to families in Palestine/Gaza but have not heard back. It could be due to the lack of electricity and inability to charge phones and computers. We are told it is almost impossible to do CF treatments there due to the lack of basic needs. The CF population in Israel is about 650 people. We are praying for everyone.

To donate to the CF community in Israel: https://www.jgive.com/new/en/cad/charity-organizations/2463
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 he explains his relationship with former girlfriend, Jean, and losing her to the disease. Rory is married to Sarah and they have two daughters.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 medicine. I hope after you hear this podcast you are more inspired to speak up and do more to change the world.

About Dr. Taylor-Cousar:
Dr. Taylor-Cousar is a tenured professor of adult and pediatric pulmonary medicine at National Jewish Health (NJHhttps://www.nationaljewish.org/home), where she serves as the Medical Director of Clinical Research Services, President of the Medical Staff, and is co-director of the Adult Cystic Fibrosis (CF) Program and Director of the CF Therapeutics Development Network (TDN) center. She received her undergraduate degree in human biology from Stanford University, and completed her doctorate in medicine, combined residency in internal medicine and pediatrics, and her combined fellowship in adult and pediatric pulmonary medicine at Duke University. She obtained her Master of Clinical Science from the University of Colorado.

Dr. Taylor-Cousar’s expertise is clinical trial design and conduct; she has been national/global primary investigator on multiple CF TDN trials. Her investigator-initiated research focuses on the development and evaluation of novel therapies for the treatment of CF, and on sexual and reproductive health in people with CF. Additionally, she serves on a number of national scientific advisory committees for the Cystic Fibrosis Foundation, American Thoracic Society and the National Institutes of Health. She is an Associate Editor for the Journal of Cystic Fibrosis and a member of the International Advisory Board for the Lancet Respiratory Medicine.

Dr. Taylor-Cousar is an elected member of the American Society for Clinical Investigation (ASCI). Her recent awards include the American Thoracic Society’s Distinguished Achievement Award (2023,) the American Thoracic Society William J. Martin II Public Advisory Round Table Distinguished Achievement Award (2022), the Emily’s Entourage CF Trailblazer Award (2022) and the Cystic Fibrosis Research Incorporated CF Champion Award (2021).

Michele and Terry Wright screening tool: https://noaacf.org/the-wright-cystic-fibrosis-screening-tool/

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 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 the struggles her father faced as he also has cancer.

The CF population is small compared to the U.S. at over 4-thousand compared to 40-thousand here, but we’re in this together. Thanks to my Canadian producer, Beth Vanstone, we are all learning about the wonderful people with CF in Canada.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com
Thanks to Beth Vanstone (of Canada) for producing this podcast: beth@thebonnellfoundation.org

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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 you! Marten lives in Crowsnest Pass in Alberta, Canada with his wife Janine, 11 year old daughter Kabrina and 13 year old son Noah.

See Marten DeVlieger and his vest: https://mymonarch.com
Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 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 patient advocate for CF Irelands service team. They provide information, guidance, grants and advocacy. He joined the organization in 2016. Rory comes from a pharmaceutical and clinical management background. And he graduated with degrees in Industrial Microbiology with chemistry and Biological Sciences. Rory and wife Sarah have daughters Florence and Aine.

(We also did a part two with Rory that will air on October 23rd)

To find out more about CF Ireland: https://www.cfireland.ie
Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 she gave birth to her twin daughters, she was suffering from pneumonia. The twins are 10 months old today. Here is her story.

Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 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 out more. She is also a Patient Family Partner and Quality Improvement Leader on the Pediatric CF Care team at Columbia Presbyterian Hospital in New York City since 2017.

Bean is also an artist who paints endangered animals in oils and works in pottery. Bean and her husband live with their dog Rosie.

Today we’re talking about Bean and her son Will. Will cannot take the CF modulator, and we discuss what it does to you mentally and physically.

Will is 26-years old and lives in Chicago. Will was diagnosed with CF at 3 months old, received a liver transplant at age 15, and is unable to benefit from modulators due to his mutations.

Will does four breathing treatments a day, rarely has more than two weeks without antibiotics, and battles hemoptysis. Will has been seen at five different CF centers. He is also an advocate. He works on family advisory boards, speaks with younger CFers, and currently sits on the Adult Advisory Council for the CFF. Will enjoys time outside with his dog Stanley, watching Philadelphia sports, and works as a fundraiser for an environmentally focused non-profit.

I am grateful for Bean, (which is her nickname) and to her son Will for being so honest about how CF has impacted their lives.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 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 journey.

Jerry Cahill is with the Boomer Esiason Foundation. He is the Director of Team Boomer a CF advocate, public speaker, Founder of YOU CANNOT FAIL and pole vault coach.

To attend the Night of Hope Celebration, Diamonds in the Sky buy tickets here or donate: https://thebonnellfoundation.org/night-of-hope-celebration/

To follow Jerry: @jcahillYCF

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

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 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 same, in India, infants are dying before they’re even diagnosed, in Pakistan, families can’t get drugs. And on and on.

Dr. Wong-Rieger recently presented at the World Health Organization, Essential Medicines Open Forum in regard to low- and middle-income countries access, or lack of it, to drugs.

Rare Disease International has done some research about this issue that Durhane will share with us. Dr. Wong-Riegers organization has proposed to WHO for a collaboration on Essential Medicines for rare disease which ties to her collaboration on global rare disease networks.

There is an initiative the P-Q-M-D or Project for Quality Medicinal Donations that has been trying to launch on “donations to sustainability” that they are recruiting companies and donor foundations to try to support. This development of the initiative is now in Stage 2 of the feasibility work.

There are models out there for global work like the World Federation of Hemophilia and International Gaucher Foundation. There is no international CF organization so far, and we will discuss that here.

She is Chair of Rare Disease International, Chair of Asia Pacific Rare Disease International, Treasurer of United Nations Nongovernmental Organization for Rare Diseases.

Chair of Patient Advocates Constituency Committee of the International Rare Disease Research Consortium, Patient Advisor to the APEC Rare Disease Network, member of the Editorial Board of The Patient- Patient Centered Outcomes Research, member of the Global Commission to End the Diagnostic Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.

Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of Ontario’s Rare Disease Implementation Working Group and member of Genome Canada Steering Committee for the Rare Disease Precision Health Initiative. She is a certified Health Coach. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada. She is a trainer and frequent lecturer and author of three books and many articles.

Producer: Beth Vanstone. If you’d like to be featured contact her at: beth@thebonnellfoundation.org

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website: https://thebonnellfoundation.org

Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Genentech: https://www.gene.com

Viatris: https://www.viatris.com/en