Living With Cystic Fibrosis

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 peo

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.orgThe Bonnell Foundation email: thebonnellfoundation@gmail.com Indubious, the band: https://www.indubiousmusic.comIndubious band podcast: https://podcasts.apple.com/us/podcast/living-indubiously/id1516907088To VIEW the podcast: https://youtu.be/CzXGOmkYY7MIndubious Documentary trailer:  https://youtu.be/qZow0brCAnwIndubious Documentary viewing: https://geni.us/MysticVibrosisIndubious FB: http://www.facebook.com/indubiousmusicOur sponsors: Vertex: https://www.vrtx.comGenentech: : https://www.gene.com/Viat

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.orgEmail us at: thebonnellfoundation@gmail.com CF Warrior Project: https://www.cfwarriorproject.org/meet-andy/Thanks to our sponsors:Vertex: https://www.vrtx.comGen

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

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

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.orgEmail us: thebonnellfoundation@gmail.comCureFound MSU:

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 Laura Bonnell will talk with Holli Seabury, the Executive Director of  the Delta Dental Foundation.  Ms. Seabury has a wealth of information about dental care.  No one likes to go to the dentist, but Holli gives us so much information and 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 employor/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 d

(I need to edit this)Not everyone with CF enjoys the same level of care.  Tragically it depends where you live.  Some countries don’t even recognize the disease yet. If a country doesn’t recognize CF, that means medications aren’t available or coverage by health insurance. 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 Chili who needed a vest, and the idea was born from that first email. Rod recently brought on his Vice President Josh Bauder.  Josh has a daughter with CF, Evangeleen.  Josh and his wife run a children’s home in Chiang Mai, Thailand.  Josh who is American married to a Thai woman has witnessed first-hand the struggles of getting a child diagnosed in Thailand. The Bonnell Foundation website: https://thebonnellfoundation.org The Bonnell Foundation email: thebonnellfoundation@gmail.comCF Vests Wo

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: (Duke kidney transplant phone number  919-613-7777https://redcap.duke.edu

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

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.comGenentech: https://www.gene.com/Viatris:  https://www.viatris.com/enThe 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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts: https://jagindetroit.com/

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.AFB: https://www.facebook.com/COTAFans/Web

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

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

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.comThanks to our sponsors:Genentech: https://www.gene.com/Viatris:  https://www.viatris.com/enThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find

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.9Our new CF Familia page: https://thebonnellfoundatio

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/enThe original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis.  You can find him on Facebook here: htt

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. 

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 th

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).  It is challenging to diagnose the Hispanic CF community because they have mutations that are less common and they are not included in the panel or they also can present with different manifestations.  The barri