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

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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 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:
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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

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.
The Bonnell Foundation, along with MichBio, National Organization of Rare Disorders, RDII and a coalition of rare disease advocates (in Michigan) have been working to get the RDAC passed for years.
A broad overview: In 2020 the RDAC began as Bill 5465, and didn’t make it very far. Then in 2021 the coalition, The Bonnell Foundation, RDII, NORD and Dr. Rapundalo of MichBio our bill sponsor, Representative Cara Clemente, attempted to get Bill 4654 passed, but it didn’t make it through the Senate Health Policy Committee due in part to some misunderstanding about the RDAC. Our thanks to Rep. Clemente for getting us started.
The bipartisan bill, 4167, got new life when Rep. Jason Morgan became the bill’s sponsor. A first time Representative, Jason Morgan has come with enthusiasm, knowledge, and his personal story of life with Becker’s Muscular Dystrophy. We’re very hopeful this bill will pass the Senate Health Policy committee in the Fall, continue to the entire Senate, and get to the Governor’s desk to be signed. The appropriation for this bill is $200,000.
RDAC will simply give us a voice. It will include 21 people who represent the insurance companies, pharma, social workers, doctors, patients, nonprofits, geneticists, nurses, and the bio industry.
We encourage you to contact your members in the Senate (on the Senate Health Policy Committee) and encourage them to pass this bill.

Contact members of the Senate Health Policy Committee: https://committees.senate.michigan.gov/details?com=HLTHP&sessionId=15
To contact Rep. Jason Morgan: jasonmorgan@house.mi.gov
To contact Dr. Stephen Rapundalo at Michbio: Stephen@michbio.org
Contact and thank Rep. Christine Morse for getting the appropriations of $200,000 for RDAC: ChristineMorse@house.mi.gov

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

Rep, Jason Morgan’s bio:
State Rep. Jason Morgan is serving his first term representing the 23rd House District, which comprises Ann Arbor, the city of South Lyon, Superior Township, Salem Township, and parts of Plymouth, Northville, Lyon, and Ann Arbor Townships.
The son of a commercial fisherman and school lunch aide, Rep. Morgan was raised in Pinconning. By working part-time and thanks to state and federal student aid, Rep. Morgan worked his way through college as a first-generation college student, earning a bachelor’s degree in political science from Northern Michigan University. He later earned a master of public administration degree from the Ford School of Public Policy at the University of Michigan.
Rep. Morgan served as a Washtenaw County Commissioner, representing Burns Park and Central Ann Arbor. He was elected chair of the board in 2019 and served as the county’s first-ever LGBTQ chair. In addition to his leadership in Washtenaw County, he served as a Northern Michigan University trustee, having been appointed by Gov. Gretchen Whitmer, and is a service member of the U.S. Coast Guard Auxiliary.
Over the last 10 years, Rep. Morgan has worked in various leadership positions in the community. He worked as the constituent services director to Michigan Secretary of State Jocelyn Benson, district director to Congresswoman Debbie Dingell, special advisor to Congresswoman Haley Stevens, transition director to Congresswoman Elissa Slotkin, director of government and community relations at Washtenaw Community College, aide to Congressman John Dingell, working as the congressman’s liaison to Washtenaw County and managing education-related casework for Michigan’s 12th District, and aide to Congressman Bart Stupak and Michigan Senate Minority Leader Michael Prusi.
Rep. Morgan’s passion is serving the community, with a particular focus on addressing economic and social inequality, LGBTQ rights, access to quality public education, transportation and infrastructure, and protecting the health of our environment. He brings these passions with him to Lansing as he serves his district.

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 by Healthwell. Healthwell pays $25 million each year for CF co-pays in therapeutic drugs. This could all change. There is a lack of funding from Corporate sponsors. Healthwell sent out a letter that stated they will have to close their CF Treatment Fund to new and re-enrolling patients The CF Vitamin and Supplement Fund however will remain open.

Answering our questions is Alan Klein, with Healthwell. Mr. Klein is the Chief Development Officer. He discusses his concern over the program that has helped CF patients since 2015. The cause for concern is that there is an increased need by the CF community. Current corporate donors gave what they could, they need more. The worry is if they can’t support the CF community, the need will triple to Foundations like ours, overwhelming most smaller Foundations.

For more about Healthwell go to: https://www.healthwellfoundation.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

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 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 CF scientists. For the past 20 years, Bob has attended the annual North American Cystic Fibrosis Science Conference. In 2017, Bob received a special invitation to attend the European Cystic Fibrosis Society’s exclusive CF Basic Science Conference in Portugal and was also asked to create and present a poster on “The Changing Nature of Interactions between Research Scientists and Patients”.

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

Follow Bob at these locations: delivererofhope.net
Follow Bob: cfrn.computerbob.net
And follow him here: https://www.facebook.com/groups/CFResearchNews

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

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 that has a character who has CF. A portion of the proceeds will go to The Bonnell Foundation.

First published in literary magazines at the age of twelve, Melodie Ramone is a lifelong writer from the suburbs of Chicago, Illinois. When she’s not behind the keyboard, she is involved with small animal rescue and is actively engaged in advocating for funding and research for cystic fibrosis. She is the bestselling author of After Forever Ends and currently resides in Central Illinois.

Book Reviewer K.C. Finn describes Melodie’s book this way:

Falls the Breath (available on Amazon) is a work of fiction in the paranormal adventure, fantasy, and action subgenres, and it forms the first book of The Brimfield Ghosts series. Penned by author Melodie Ramone, the work is best suited to mature readers due to some moderate adult content, violence and language. This captivating and emotionally charged tale weaves together the lives of the living and the dead. When tragedy strikes and Lorenzo is murdered, he becomes a restless poltergeist haunted by his own hazy memories. The novel takes a unique twist when quirky maid Mahoney Miller joins Lorenzo as a ghost. The two form an unexpected connection as they navigate the afterlife together. When the young Kotilla daughters can see and hear the ghosts, the boundaries between the living and the dead blur even further.

Author Melodie Ramone has crafted a highly engaging novel that explores themes of mental illness, bullying and chronic disease, making for a poignant and thought-provoking read. The characters’ determination and stubborn love, both for the living and dead, shine through as they face overwhelming odds to keep young Kevin alive. One of the features I enjoyed most about this work was the author’s talent for atmosphere, crafting gorgeous imagery and mood through vivid description. This book is a masterful blend of history, family drama, and the supernatural, leaving readers both moved and enthralled. Overall, Falls the Breath is a gripping and heartwarming story that will stay with you long after the final page, and I, for one, can’t wait for more in this engrossing series.

To follow Melodie: @melodie_ramone

Find Melodie’s book here on Amazon: https://www.amazon.com/Falls-Breath-Brimfield-Ghosts-Book-ebook/dp/B0CBYHB6LF/ref=sr_1_1?crid=2LOAY674JX559&keywords=falls+the+breath+melodie+ramone&qid=1689879708&sprefix=%2Caps%2C162&sr=8-1

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

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 with CF.

Megan met Alec when she was 19 years old at the University of Michigan, and they have been together for 7 years. They are planning their June 2024 wedding. Megan works as a Customer Experience Associate at LinkedIn, and stays active in the CF community helping the Bonnell Foundation and the CF Foundation.

The Bonnell Foundation is grateful to Megan for her volunteering commitment to us, since 2019.

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

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 camaraderie and strength of our wonderful CF community.

Travis Suit, the Founder of Piper’s Angels is a sweet soul and the father of Piper who has CF. Recently Travis discovered he has CF (and his two sisters do as well). In 2017 Travis started the paddle event. Paddlers start in Bimini, Bahamas, and land on the Beach in West Palm Beach. It was an incredible event to witness.

Hats off to everyone who participated. I have so many new friends and it was great to see people in person, finally.

Thanks to Beth Vanstone (producer) who met me in West Palm Beach from the Toronto area. I could not have done it without you. We really are very funny in this wonderful podcast (and in general).

Thanks to editor Jon Gay for putting this podcast together as I recorded it in short segments on my iPhone.

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

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 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.

Thanks to Beth Vanstone for producing this podcast.

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

To read more about Lisa: https://www.lisabentley.com/an-unlikely-champion/

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

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, 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. She was competing in one worldwide event and she was very sick. She reminded herself that she may not win, but that she would do her best for the CF community. She took antibiotics and powered through.

You will walk away from this podcast with a plan of positivity for your life.

Thanks to Beth Vanstone for producing this podcast.

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com
To read more about Lisa: https://www.lisabentley.com/an-unlikely-champion/

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

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 when Travis decided to have Piper tested, and then himself. His story is almost unbelievable.

​You will find his journey inspiring, and once you hear about all he is doing for the CF community, you’ll love him even more. The Crossing for Cystic Fibrosis​ raises funds for his Foundation. Paddlers travel the ocean from the Bahamas to Florida. His programs help so many. Pipers Angels Foundation supports the CF community through their Urgent Financial Assistance program. This program supports people who are in need of medically necessary and time sensitive financial assistance. And many other programs you can find in our show notes. Pipers Angels has a famous advisory Board member who believes in what they do: Jimmy Buffet.

It’s time to dive into the life of Travis Suit. You’re going to love this podcast.

Thanks to Beth Vanstone for producing this podcast.

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

To learn more about Piper’s Angels: https://www.pipersangels.org/about

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

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, 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 at Peds Pulmonology UAB and has been at the CF Center since 2003.

Dr. Gutierrez has developed a robust training program for CF teams from resource-limited regions outside the US. He is currently the Co-chair of the CF Foundation’s Global Advisory Committee. We’re honored to have him join us today. He has so much knowledge of CF life around world, and we’re grateful that he shared his knowledge with us.

Thanks to Beth Vanstone for producing this podcast.

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

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, then he was given the latest CF modulator and his lung function jumped up to 50 percent. He has no need for a transplant at this time. He is proud to say he has not been hospitalized in three years.

Jacob recently launched a new initiative to fill the need for pancreatic enzymes and multi-vitamins to people with CF in countries without the resources to acquire these basic CF needs. With the help of doctors 13 prescriptions have been written, several doctors and hospitals have reached out to him, and a 6-month supply of pancreatic enzymes have made it to the hands of 3 very sick underweight patients in Tunisa. Jacob relentlessly pursues and embodies self-transformation as a way of being and shares that with everyone he meets. He emphasizes the power of ‘showing up’ for us and others, and points to the reservoir of courage, wisdom, and humor that is self-revealing in the adversity of our everyday lives. A devotee of non-duality, Jacob blends a bold and adventurous personality with a grounded presence that honors the beauty in our divine nature and celebrates the precious gift of life.

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com
To reach Jacob: jacob@livefearlesslyfoundation.org
Instagram: @livefearlesslyfoundation

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

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 the scientists who discovered the gene that causes CF).

From news reporter to CF advocate.

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

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 is well known in the CF community. We talk about the CF Social Security Project. There is so much to learn if you’re considering social security.

Beth is the Director of the CF Legal Information Hotline which has been providing legal information to the CF community for 25 years. Beth is the author of 3 books and hundreds of articles related to the legal rights of people with CF and other disabilities.

To contact Beth (she says email is best): CFLegal@sufianpassamano.com
Or call her at: 800-622-0385

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

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 people with CF in India (India has a population of 1.4 billion). The life expectancy in India for someone diagnosed with CF today is between 7 to 12 years old. If you live into your 20’s that is considered old. Dr. Sneha Varkki says she loses a patient every month to the disease.

Dr. Grace Paul works from the U.S. to help people with CF in her native land. She helped train and continues to support Dr. Sneha Varkki. There are no CF centers, no newborn screening, no health insurance. The government doesn’t recognize the disease yet. Infants are dying of malnutrition before they can even be diagnosed with CF. The solution: education and getting all parties to work together on all the challenges people with CF face.

Dr. Grace Paul, is an associate professor of pediatrics, and a faculty member in the Division of Pulmonary and Sleep Medicine at Nationwide Children’s Hospital for the past 10 years. Dr. Paul completed her medical education at Christian Medical College in Vellore, India, followed by pediatric residency at Case Western/MetroHealth Medical Center in Cleveland.

Dr. Paul is passionate about global CF, with special focus on the diagnosis and management of CF in low-and-middle income countries. She is a member of the CF Foundation Global Advisory committee and was a member of the International Health Committee of the American Thoracic Society.

She has published, and is actively publishing on CF care in developing nations and is advocating for more cost-effective access to CF medications.

She and her collaborator — Dr. Sneha Varkki received funding from the CFF to establish a CF center in South India and have been working hard to improve CF diagnosis and care among patients with CF in South and North-East India, and Bangladesh.

Dr.Sneha Varkki is a professor in the dept of pediatrics, Christian Medical College,Vellore,a large tertiary (ter-ti-ary) care teaching hospital in southern India. She completed her undergraduate and post graduate training in Pediatrics from the same institution and has been faculty in the department for the last 22 years. Her special interest is Paediatric respiratory Medicine, specifically Cystic Fibrosis.

From 2010, the team at CMC, Vellore has cared for around 200 patients with CF. With the help of a grant from CFF, and in collaboration with Dr,Grace Paul, last 5 years were devoted to spreading awareness about CF among medical professionals, training multiple allied health teams across India and educating parents of children with CF.

Parents live in fear everyday about their child’s life expectancy. Dr. Deepthi Raidu talks to us about losing her son, Shreyansh to CF. The median age of survival is between 5 to 7 years, living to your 20’s in India is considered old.

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

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

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 shouldn’t marry, did not keep them apart.

They met in 2014 in a Facebook Cystic Fibrosis group where Farrel was sharing a testimony of how changing her diet had helped improve her lung function and quality of life, despite losing a couple of pounds in the process.

Zack, being familiar with his own journey with crossfit, had experienced similar results in increased lung function even though he too had lost a few pounds while increasing his cardiovascular exercise. They didn’t believe in the ‘eat everything you can’ in high calorie mantra that was told to all CF parents at diagnosis. The couple followed each other on social media, but it wasn’t until the following May of 2015, when the daily communication began.

Zack (37 years old) and Farrel (40 years old) married in July of 2016. It wasn’t without controversy, and that is where our discussion with them begins.

Email at: thebonnellfoundation@gmail.com
The Bonnell Foundation website: https://thebonnellfoundation.org
Zack: @debaltzo
Farrel: @farrelwrites

See Farrels work:
Contact Farrel: Farreldebaltzo@gmail.com

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

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 Mari Pitcher, the program is back!

Mari is a licensed clinical social worker specializing in adjustment, grief work, trauma work and patient and family centered care for individuals, and their families, with chronic and life limiting illnesses. Currently a member of the University of Michigan Health Systems’ pulmonary clinics, Mari provides social work and mental health support to persons with CF and other pulmonary diseases. Mari has over 20 years of hospice, palliative care, trauma, adjustment and grief related experience. Additionally, she has worked as a therapist supporting individuals with PTSD, histories of abuse and/or traumatic loss. Mari is an adjunct lecturer in the University of Michigan School of Social Work Masters program. We’re thrilled to have her.

To reach Mari Pitcher: pitcherm@med.umich.edu
The Bonnell Foundation: https://thebonnellfoundation.org
Email us: thebonnellfoundation@gmail.com

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

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 Bonnell Foundation and others have worked tirelessly to raise awareness, and to make change in many middle eastern countries, but it’s a slow process.

This is why we’re excited to tell you about the non-profit Dr. Golnar Raissi and her husband created to help them at their CF clinic in Stanford, Connecticut. They put together the CF Bridge of Hope to extend the same treatment people are getting in the U.S. to people living in other counties with limited resources.

Doing great work with Dr. Raissi and her husband, is Bean Corcoran. Bean helps with the entire program, getting applications complete and another part of the program. They also can send unexpired meds to people in need, and the organization pays for shipping. So if you have CF meds you don’t need, email the Bridge of Hope. Beans adult son Will has CF. CF Bridge of Hope is currently helping people in Romania, Guatemala, Ukraine and Pakistan.

The Bonnell Foundation podcast page: https://thebonnellfoundation.org/audio-podcasts/
Email us at: thebonnellfoundation@gmail.com
CF Bridge of Hope email: cfbridgeofhope@gmail.com
CF Bridge of Hope: https://www.cfbridgeofhope.org

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

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 sweat testing. This is according to information put out in part by the Official Journal of Asian Pediatric Society in the Pediatric Respirology and Critical Care Magazine.

Dr. Harutai Kamalaporn is the Pediatric pulmonologist. She received a medical degree and certificate in Pediatric Pulmonology from Mahidol University in Bangkok in 2004. Dr. Kamalaporn completed her clinical and research fellowship training at the Hospital for Sick Children (SickKids), University of Toronto, Canada in 2008. Her research mentors were Professor Sharon Dell who is an expert in Asthma and Professor Allan Coates who is an expert in Aerosol Medicine. Dr. Kamalaporn is now an Associate Professor, Director of Pediatric Pulmonary Fellowship Training Program at the Faculty of Medicine Ramathibodi Hospital, Mahidol University. Her area of interest includes CF, asthma, pediatric respiratory care and chronic lung disease of the infancy. She has participated in the recent publication of “CF in Asia”.

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
The Bonnell Foundation website: https://thebonnellfoundation.org/audio-podcasts/
The Bonnell Foundation email: thebonnellfoundation@gmail.com

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 my understanding (Laura Bonnell) that Vertex reached out to many CF nonprofits so that in addition to communicating directly with enrolled patients, foundations like mine would also help spread the word and know where to direct people if they had any questions.

Vertex has communicated that they oppose any programs or initiatives that increase costs for patients. This means for example, an insurance company taking funds that were provided to patients as part of the GPS program.

Co-pay accumulators and maximizers work this way. Let me explain: You take your assistance or coupon from your pharma and give it your pharmacy. The insurance company gets those funds, but they don’t go toward your out-of-pocket responsibility. So, the insurance company actually gets paid twice. In Michigan, advocates like myself are trying to change this law so that co-pay assistance gives credit to the consumer.

You may have seen press releases or posts on social media from other foundations or patients regarding these changes, some of which express concern that people taking Vertex medicines will literally pay the price. Vertex has assured their enrolled patients that no one will go without their medication.

I’m here with Jenna Harrington- who is the Head of Vertex’s Guidance and Patient Support Program – to help us understand more about these changes, who is impacted, and why these changes were made.

I also have another guest with us- Amit Sachdev- who is the Chief Patient Officer at Vertex. These changes are being made due to restrictive insurance practices and ultimately, we need a systemic solution for people living with chronic diseases. He will be talking about the policy aspect and what we can do to get more involved to support policies that are beneficial to the CF community.

To be transparent, Vertex is a sponsor of this podcast and our Night of Hope Event. My foundation remains objective in getting out information and will call out any person or partner if we believe they are harming or not addressing our CF community properly.

To reach GPS with any questions: 1-877-752-5933, press option 2 when calling. Vertex GPS™: Guidance and Patient Support is committed to helping all enrolled patients maintain access to their Vertex medicine through the January 2023 Co-pay Assistance Program changes.

To help in the fight to make healthcare fair get in the fight with The Bonnell Foundation. Help us fix what is wrong with the co-pay accumulator in Michigan. To help in Michigan or elsewhere go to: Allcopayscount.org

A Federal solution is also needed read up on H.R 5801 The HELP Copays Act bill.

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

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 motivated to change the world. They work closely with the CF Clinic at MSU run by Dr. Ryan Thomas. Part of what they do is to offer their 70 members top tier opportunities in the field. So along with resume building, they also fundraise. In 2023 they will be doing some fundraising for The Bonnell Foundation and the CF Foundation. You’ll be inspired to do more yourself after you hear everything Atef and Naim are up to. Our hats off to them for their enthusiasm, sense of community and for all the ways I know they’re going to change the world for the better.

The Bonnell Foundation: https://thebonnellfoundation.org
Email us: thebonnellfoundation@gmail.com
CureFound MSU: https://curefoundmsu.org

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

Did you know your child should visit a pediatric dentist? Did you know that people with CF generally have better dental health than the rest of the general population? Are you familiar with a toothbrush that connects to your phone and will let you know if you’re brushing your teeth correctly? Did you know if your CF child has reflux (very common in CF kids) this can impact their dental health.

In this podcast I talk with Holli Seabury with the Delta Dental Foundation, she has a wealth of information about dental care. No one likes to go to the dentist, but Holli gives us so much information that you will find yourself wanting to learn more! Did you know if your child has CF (or a chronic illness) they can get 4 teeth cleanings a year, even if your employe/insurance says they don’t cover it. Holli will explain how this works. Hollie Seabury, EdD, is the executive director of the Delta Dental Foundation. She is committed to oral health equity and advancing dental science through education and research.

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

Colgate Hum toothbrush on avg. is $14.00. There is also a Colgate Hun toothbrush for adults. Its about $68.00 There at Target, Here are some choices on Amazon, or just search on google. https://www.amazon.com/s?k=colgate+hum&crid=3CZRRCF44509B&sprefix=colgate+hum%2Caps%2C90&ref=nb_sb_noss_1

Delta Dental Website: https://www.deltadental.foundation/about-delta-dental-foundation
Delta Dental All Smiles Shine App: https://www.deltadental.foundation/all-smiles-shine-app
Delta Dental Foundation FB: https://www.facebook.com/DeltaDentalFoundation
Linkedin: https://www.linkedin.com/company/delta-dental-foundation/
Twitter: https://twitter.com/DDFGivesBack

Not everyone with CF enjoys the same level of care. Tragically it depends where you live. Some countries don’t even recognize the disease. If a country doesn’t recognize CF, that means medications aren’t available and there is no health insurance coverage. All of us are working together to change the world for people who have CF.
Doing his part is Rod Spadinger who founded CF Vests Worldwide a couple of years ago. Rod has CF and is alive thanks to a double lung transplant. Rod got an email from a girl in Chile who needed a vest, and the idea was born from that first email. Rod recently brought on his Vice President Josh Bauder. Josh’s daughter Evangeleen has CF.  Josh and his wife run a children’s home in Chiang Mai, Thailand.  Josh, an American is married to Chitty, who is Thai. The couple has witnessed first-hand the struggles of raising a child in Thailand, the care and medications are not the same.

The Bonnell Foundation website: https://thebonnellfoundation.org 
The Bonnell Foundation email: thebonnellfoundation@gmail.com
CF Vests Worldwide Website: https://www.cfvww.org/
CF Vests Worldwide Facebook: https://www.facebook.com/CFVestsWorldwide
CF Vest Worldwide YouTube: https://www.youtube.com/channel/UCdLSDUZyIduG_LI8OIwWJXw

Attorney Jen Weber is 49 years old and waiting to have her third lung transplant. Weber lived in Indiana until this third transplant, when she had to move to Durham, North Carolina to be near her transplant hospital: Duke University Health. Weber also started a non-profit five years ago that meets inpatient and outpatient needs ( for example: pajama pants, slippers, cell phone chargers). Weber worked for the Indiana Supreme Court for 16 years (in personal and operations) while going through her first transplant. Weber is trying to help us understand the emotional and financial toll a transplant can take on a person, and their family.

As she waits for her third transplant Weber is in need of a living kidney donor. Anyone interested in getting tested can call: 919.613.777.

Something we did not talk about in the podcast is her love of music! Weber is a cellist! She still plays with the Carmel Symphony.

Duke kidney donation application: https://redcap.duke.edu/redcap/surveys/?s=9EHPAAPMFM
Donate to C.O.T.A for Jen’s transplant expenses: https://cota.org/campaigns/COTAforJenWarrior
Comfort Finders Foundation: https://comfort-finders.org

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts: https://jagindetroit.com/