Living With Cystic Fibrosis

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...

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 abou...

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...

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, becau...

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 ever...

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...

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 li...

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...

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...

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 th...

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 p...

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 reache...

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 wit...

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...

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 c...

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 w...

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 K...

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,...

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 th...

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...

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...

Dr. Jennifer Shedden, with Genentech, 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...

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...

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...

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 pr...