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Podcasts are here! Listen to the Living With Cystic Fibrosis podcast on iTunes, Spotify, Google Play, or your favorite podcast source.

Dr. Hector Gutierrez

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

Surfer Jacob Venditti Lives Fearlessly with CF

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

From diagnosis to Foundation: Laura Bonnell

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

Attorney Beth Sufian (who has CF) talks social security

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

CF Realities in India

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

Being heard: CF and diagnosis when your African American

It’s 2023, surely now people of color are correctly being diagnosed with cystic fibrosis right? Nope. They are still underdiagnosed. We hear about it happening in low income countries, but it’s happening right here in the USA.

Rachel Alder was diagnosed barely 5 months ago, at age 26. She was misdiagnosed until January 2023. Rachel was born before newborn screening could detect CF. And, because not all mutations are under represented in testing, her diagnosis would still most likely have been missed. We have to change this.

Rachel Alder today, or Rae as she likes to be called has been an advocate her entire life. Rachel, who is African American. It is still unbelievable to those of us advocating and raising awareness about the disparity in diagnosis in people of color, it is still happening. As a reminder, anyone, regardless of race can be diagnosis with cystic fibrosis. The number of people diagnosed with CF is certainly higher than is what currently reported. Rae is a transracial adoptee, which means she was adopted by parents who are a different race. Rae identifies as queer, and a full time CF Warrior.

In the beginning of her career, she worked on diversity victim advocacy with survivors of sexual assault, human trafficking, and domestic violence. After her January CF diagnosis, she started focusing on patient advocacy, and specifically on health equity. Rae herself overcame racial bias, health disparity and a decline in her own health until her diagnosis.

National Organization for African American’s with cystic fibrosis: https://noaacf.org
Children’s Organ Transplant Association: https://cota.org
Bonnell Foundation CF Master Class: https://cfmasterclass.org
Bonnell Foundation website: https://thebonnellfoundation.org
Email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en
Information about Institute for Economic and Clinically Review (ICER): https://www.engagecf.org

Medora Frei

The CF community is a small, tight knit group. There are 40-thousand patients with CF in the U.S., and double the amount of parents. many of us in the CF community know each other, or have heard of one another.

I did a podcast about CF Vests Worldwide, and todays guest, Medora Frei, reached out to Rod Spadenger to tell him how much she enjoyed the Living with CF podcasts. Medora listened to every podcast we have produced. She wrote the nicest note to me after Rod connected us. She said our podcasts have “helped her, validated her and inspired her”.

So I researched her a little and thought, she has to be on this podcast! Medora was not diagnosed until she was 18 years old, and she’s only been living with the knowledge of what having CF means for 10 years. I am honored to share her story with you.

Medora says: “The “Living with Cystic Fibrosis” podcast by the Bonnell Foundation has been instrumental in my journey as a person with CF. My CF diagnosis came later in the life at age 18. Through Laura’s wonderful guests and information shared, I’ve learned so much more about CF and have been validated in my experiences with the disease. It has also helped me feel a greater sense of community and inspired me to share more about my own journey. The podcast has also shared tangible resources for those of us with CF and other chronic diseases, and I have directly been helped by a few resources and organizations they’ve shared about. I have listened to each episode of the podcast and am greatly inspired by the work The Bonnell Foundation is doing within the CF community. I would encourage everyone to help out in any way they can”!

Medora released a book that is part art book/part abbreviated memoir; it’s called “These Are My Flowers: My Story of Composting Trauma into Colorful Art.” You can check out her website or follow her on Instagram.

Instagram: @medorafrei.art
Fedora’s website: www.medorafrei.com
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

CF Spouses: Zack and Farrel both have CF

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:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

CF conversations held by a Michigan CF clinic!

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

CF Bridge of Hope

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

Indubious

Indubious. Live Indubiously. Indubians. What am I talking about? The band Indubious was founded by two brothers, 38 years old Evan Burton and 41 year old Skip Burton. Both happen to have CF. They recently released an incredible documentary about their CF journey. Both Evan and Skip have both been through so much since their diagnosis all those years ago. We’re taking you backstage, to get the story from Evan about life with CF, the band and the future.

The Bonnell Foundation: https://thebonnellfoundation.org
The Bonnell Foundation email: thebonnellfoundation@gmail.com
To VIEW the podcast: https://youtu.be/CzXGOmkYY7M
Indubious, the band: https://www.indubiousmusic.com
Indubious band podcast: https://podcasts.apple.com/us/podcast/living-indubiously/id1516907088
Indubious Documentary trailer: https://youtu.be/qZow0brCAnw
Indubious Documentary viewing: https://geni.us/MysticVibrosis
Indubious FB: http://www.facebook.com/indubiousmusic

Our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en

CF Warrior Project: Andy Lipman

Almost everyone in the CF community knows who Andy Lipman is and all the contributions he has made. Andy, and his older sister Wendy were born with cystic fibrosis. Wendy died when she was only 16 days old. The Lipman family founded The Wish for Wendy Foundation, in her honor. Andy has a youngster sister Emily, who was adopted. To raise funds for his Foundation Andy has written several books that fall under the CF Warrior Project name. The CF Warrior Project is what Andy calls a movement. He has raised millions of dollars to help fund research and raise awareness.

Andy and his wife Andrea live in Atlanta, Georgia with their teenage daughter Avery, and son Ethan. Andy’s 4th book: The CF Warrior Project: 65 stories of Triumph Against Cystic Fibrosis Volume Two can be purchased on Amazon.

The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com
CF Warrior Project: https://www.cfwarriorproject.org/meet-andy/

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

CF in Thailand: one on one with Dr. Haruthai Kamalaporn

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

GPS Vertex program: explained

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

Cure Found MSU – pre-medical students changing the World

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

Dental Health: An Informative, Fun Discussion!

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

CF Vests Worldwide

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

All things Lung Transplant with Jen Weber

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/

A Kid Again Adventures

We’re talking today with the founder of A Kid Again, Kathy Derr. It is a nonprofit organization that plans family adventures in many states across the U.S.  and the adventures are free to families.

Kathy Derr and two of her friends started the nonprofit camp 25 years ago. Kathy’s son Christopher died from an inoperable brain tumor.  She started A Kid Again in her son’s honor.

Kirsten Kulik is A Kid Again mom.  She has three kids, and her son Chase has cystic fibrosis.  Kirsten tells us what the camp meant to her, and the family.

Kathy Derr is co-founder and current Director of Family Engagement for A Kid Again, a national nonprofit that provides year-round, cost-free, fun-filled Adventures for kids with life-threatening conditions and their families. Kathy and two friends started the nonprofit more than 25 years ago in memory of Kathy’s son Christopher after he passed away from an inoperable brain tumor. The spark for A Kid Again was inspired by the kindness of Kathy’s family and friends who organized outings for her family during her son’s battle with cancer. A Kid Again is the only childhood disease nonprofit that focuses on group recreation and support for the entire family, not just the child with the illness. Today, A Kid Again serves more than 10,000 families nationwide.

Kirsten Kulik is an A Kid Again mom. She and her husband Jody are parents to Jacob, 19, Chase, 16, and Skye, 8. Her son Chase was diagnosed with Cystic Fibrosis in September 2016 and the family has been part of A Kid Again since 2019. In addition, Susan also works as Vice President and General Manager for FAST International, Inc. and enjoys volunteering with A Kid Again, Cystic Fibrosis Foundation, and the Electrocoat Association.  As a pastime, Kirsten enjoys watching her two sons drag race which they have been doing since they were 8 years old.

https://thebonnellfoundation.org

A Kid Again contacts: 

https://www.linkedin.com/company/a-kid-again/

https://twitter.com/akidagain

https://www.instagram.com/a_kid_again/

https://akidagain.org/

https://www.facebook.com/akidagain/ 

Our first CF Podcast in Spanish

Dr. Jennifer Shedden of Genentech reached out to the Bonnell Foundation to raise awareness about cystic fibrosis in the Hispanic community, and the non-CF community. We started the CF Familia page!
We recently did a podcast together that focused on our CF Familia page. This page on our website focuses on the challenges the Hispanic community runs into before and after diagnosis In this podcast, Dr. Jennifer Sheddan answers all the questions in Spanish. Enjoy.

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/

Costly transplants: don’t go broke. More help…

The Children’s Organ Transplant Association (C.O.T.A), helps people waiting for transplants, fund the procedure and everything that surrounds it.

Laura Bonnell learned about COTA when her nephews needed a bone marrow transplant (not CF related).  When someone needs a transplant, they usually living in their home state and getting a transplant in another state or city.  They have to be close to their transplant hospital.  They might be there for four months. This means there is an additional rent cost, transportation costs, spouse or a parent staying with you, etc. Rick Lofgren joins us today to talk about C.O.T.A.  As you know, The Bonnell Foundation offers lung transplant grants. But even our grants don’t cover all the costs of a transplant, and health insurance certainly does not cover all the expenses.

C.O.T.A, as you’re about to hear, is a non profit, so family’s will not be taxed on the money raised (which is true of Go Fund Me fundraisers).

Social media for C.O.T.A
FB: https://www.facebook.com/COTAFans/
Website: https://cota.org
Twitter: https://twitter.com/COTA_ORG
Linkedin: https://www.linkedin.com/company/cota_org/

Instagram: https://www.instagram.com/cota_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/

CF and Colon Cancer

CF and Colon cancer, the risks are higher than you may be aware. Anna Payne is 35 years old and was diagnosed with stage 4 colon cancer a year ago.Anna is advocating to get colon cancer screening down to age 25 for people with CF. She’s in the fight of her life, and she’s fighting for others. I hope this podcast reaches CF families that need to hear this critical message, and that it makes you an advocate.

Anna’s Foundation: http://bccfa.org
Anna’s email: buckscountyCfalliance@gmail.com
Anna’s Public Service Announcement: https://mail.google.com/mail/u/0/#inbox/KtbxLxGvbxbndnpNLnVrlGQpTHbCpnHxhg?projector=1
CFRI’s colon links: : https://www.cfri.org/acolonscopycansaveyourlife/
Cystic Fibrosis Foundation information page: https://www.cff.org/managing-cf/about-colorectal-cancer

Andrea and Alyson Hoffman

Andrea Hoffman and Alyson are twins born with CF. Andrea is 30 seconds older than her sister. The women attend Ohio Northern University. As you will hear, they are over achievers!
This is the twin’s Senior year of college. Andrea plans to attend law school after she graduates. Andrea advocates on the state and federal level. And she sits on the Rare Disease Advisory Council (RDAC) in Ohio (the RDAC is something Michigan has yet to pass). Andrea received her second Bonnell Foundation Education scholarship this year, and will speak at the Foundations September 30th gala along with her sister Alyson.
Alyson also attends Ohio Northern; received a scholarship from the bonnell foundation. Alyson has a triple major, and also a minor degree. Alyson says she enjoys in person sharing about CF, rather than sharing her story on social media. She does a lot of public speaking about CF. As you hear these women speak you will be inspired by their energy and you’ll realize, they’re going to change the world in many ways.
Both talk about staying healthy during a pandemic, doing treatments at college and much more. Lets get this conversation started!

To connect with the Hoffman sisters, you can send them an email.
Andrea: a-hoffman.4@onu.edu
Alyson: a-hoffman.7@onu.edu

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
To meet Wes: https://www.facebook.com/wes.hawkins.9
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/

Dr Jennifer Shedden

Dr. Jennifer Shedden reached out to the Bonnell Foundation to see if we were interested in raising awareness about cystic fibrosis in the Hispanic community, and the non CF community. The Bonnell Foundation said “YES”.
In this podcast we talk about all the barriers that people of color face when trying to get diagnosed, and we focus on challenges the Hispanic community. We now have a page on our website called CF Familia that is in both English and Spanish. There is information about CF, offers resources and CF stories from the Hispanic community. Lets dive right into the subject now.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Jennifer’s email: Jennifer.Shedden@ashfieldhealthcare.com
Thanks to our sponsors:
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 – www.jagindetroit.com

Wes Hawkins

As we wrap up pride month, we have a lovely story to tell you. It’s Wes Hawkins story. All of us at The Bonnell Foundation know there are many people with CF that are in the LGBTQ PLUS community. Host Laura Bonnell saw a post by Wes Hawkins on FB. He shared his CF journey and his coming out story. The Bonnell Foundation wanted to share his story on our podcast. Wes is 30 years old. We start the podcast talking about his CF health, and then he tells us about when and why he decided to speak his truth. Wes lives in Oklahoma; he has two older brothers who do not have CF. He grew up in a religious family. His Dad, in the early days, raced greyhounds and he was a young boy surrounded by hundreds of dogs. Wes now lives in his own house on his mom’s ranch where he is surrounded by 70 cattle, a horse and miniature pony.

For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
To meet Wes: https://www.facebook.com/wes.hawkins.9
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Thanks to our sponsors:
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/

My Mom, Lois Teicher and I talk all things CF!

My Mom, Lois Teicher is a famous sculptor in the U.S. and a strong cystic fibrosis supporter. In this podcast we talk about how grandparents feel when they hear the CF diagnosis. I realized that I was always focused on how our family was doing, and never really asked my Mom how the diagnosis of Molly and Emily impacted her. So we talked all things CF in this podcast. You can check out my Mom’s incredible work using the link below. My Mom and Dad divorced before my daughters were born. My Mom and her partner Natalie have supported our daughters all these years.

Lois Teicher Website: https://loisteichersculptor.com/

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:

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/

Laura Varon Brown

Former Detroit News reporter, Laura Varon Brown talks to The Bonnell Foundation about losing her Detroit News photojournalist husband, Jim, too cystic fibrosis.
In this podcast Laura Varon Brown talks about his life, legacy and they daughter Molly they had together. The couple married in 1985, before the cystic fibrosis gene that causes cystic fibrosis was discovered by scientists in the genome project. Jim sadly died from the disease just 5 years later, 13 weeks after their daughter Molly was born.
Laura Veron Brown talks to Host Laura Bonnell about Jim’s last work trip to the West Bank. Jim was there to take photographs of the armed prising of Palestinians against the Israeli occupation of the West Bank and Gaza Strip. Laura talks about being married to someone with CF, and about all the joys it brought to her life.
Varon-Brown also talks about how she moved forward, remarried and had a second daughter, Emma.
The two Laura’s have been friends for 10 years and talk about the disease that brought them together.

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:
Genentech: https://www.gene.com/
Viatris: https://www.viatris.com/en
Laura Varon Brown: https://www.gildasclubdetroit.org
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/

Amy Gaviglio

Cystic Fibrosis is not a disease that only impacts white people, but for years and years, it’s been treated that way. Now thanks to organizations like The National Organization of African Americans with Cystic fibrosis and their founders, Michele and Terry Wright telling the story of his late diagnosis (he was 54 years old), diagnosing people of color is slowly changing. Many people of color are not diagnosed at birth despite newborn screen because their rare genetic mutation may not be one of the mutations tested in the panel. The Hispanic community has certainly found this to be true. The Bonnell Foundation debuted a page for the Hispanic community. There are story’s, videos and a description about CF in both Spanish and English on our website.
Here to explain to us, in terms we can understand is Geneticist Amy Gaviglio. She is a certified genetic counselor and public health genetics consultant who has been working in the Newborn Screening arena for the past 14 years. She is currently a consultant with the Centers for Disease Control and Prevention, Association of Public Health Laboratories (APHL), and Expecting Health, amongst others.
For more information on The Bonnell Foundation find us at: https://thebonnellfoundation.org/
Our new CF Familia page: https://thebonnellfoundation.org/familia/en-home/
Please visit for health equity: https://noaacf.org/health-equity/terry-wrights-law/
Thanks to our sponsors:
Vertex Pharma – the science of possibility. https://www.vrtx.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/

Dr. Johanna Zea-Hernandez

The Bonnell Foundation continues to raise awareness about cystic fibrosis and that anyone can be born with CF. Dr. Johanna Zea-Hernandez, pediatrician Pulmonologist in Grand Rapids. She Universidad Nacional de Colombia School of Medicine in Bogotá, D.C., Colombia. She completed her pediatric residency at Mount Sinai School of Medicine – Elmhurst Hospital in Elmhurst, New York, and her pediatric pulmonary fellowship at The Children’s Hospital at Montefiore in Bronx, New York. Dr. Zea-Hernandez’s clinical interests include asthma, cystic fibrosis and chronic lung disease.
We talk about the many challenges for the Hispanic population to get properly diagnosed.  Often the Hispanic community is not diagnosed by newborn screening (only the most popular 60 panels are listed, and there are 2,000 CF mutations).  Pediatricians don’t always correctly diagnose CF in the Hispanic Community.  The barriers facing the Hispanic community can be socio economic, language barriers and other factors you’ll hear about in this podcast.
Please check out the Bonnell Foundations Hispanic page.  Go to our website and click on Living with CF, you’ll see the drop down and can click on the CF Familia page.

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 Pharma – the science of possibility.  https://www.vrtx.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/

CF in Canada with Beth VanStone

Cystic 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 shortcomings of the healthcare system in Canada.
Laura and Beth talk about the need for an international approval process for new drugs and treatments for rare diseases, so patients don’t have to wait for each country to approve every treatment. The two talk about how a collaborative, patient-centered discussion would benefit so many. The discussion includes the topic of Insurance companies and Pharma. Companies are often vilified, but it’s going to take all stakeholders to affect change.

Thanks to our sponsor:
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/

The Living with Cystic Fibrosis podcast is honored to receive the 2021 MarCom Award for Marketing and Communications.

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