Living With Cystic Fibrosis

From news reporting,  to CF and beyond.  Laura talks about her journey. 

The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off,  and now look at it!  We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Education Scholarships. Our programs have also grown, with more on the way.  We're so glad you're a part of it".

To reach Laura: thebonnellfoundation.org

Or follow us on social media (see below)

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

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We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988.

Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her Grandmother, her legal guardian raised Sorcha and was her rock. 

Then, after her grandmother died, she struggled. Sorcha started using drugs to numb herself from the struggles of her physical and mental illnesses. This went on for about two years.

Then she focused on getting healthy. Today, she relies on movement, nutrition, and self-care to stay present and optimize her quality of life. She’s passionate about raising awareness about addiction and holistic treatment of health of wellness among the chronic illness community. She is also a certified health and wellness coach. Sorcha works with an organization called, Face it Together. A nonprofit that helps others impacted by addiction to get well. 

To find out more about what Sorcha does, check out this website: https://www.wefaceittogether.org/

Sorcha's Instagram @sorchamtnmary

Business FB: https://www.facebook.com/wefaceittogether

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

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In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children’s Organ Transplant Association (COTA). Rick Lofgren has been the non profits president for more than two decades. Rick helps raise millions each year to support families with the cost for transplantation. In addition to all he does, Rick is married with kids of his own.

I learned about Rick, from my brother.  My nephews Colton and Caden had a rare disease called Chronic Granulomatous Disease (CGD). CGD is passed down through the mother, only to sons, not daughters. CGD causes frequent and life-threatening infections because their immune system can’t fight off certain harmful bacteria and fungi. My nephew’s mother is the carrier. Women do are only carriers of the genetic disease, only boys have the genetic diesase. The great news: there is a cure. Both my nephews were cured. 

About my brother and nephew. Noah works for Abbott Laboratories as a district manager across several states and has three kids, and a stepson wife his wife Lisa. My nephew Colton is a Patient Care Coordinator at a specialty Pharmacy in Detroit. Colton is an advocate for his disease and the rare community.

This is a reminder that it’s good to share information because after my brother told me about COTA, I connected with Rick at COTA.  The Bonnell Foundation and COTA are now partners helping people who need funds for transplants, and all that it entails.

Colton will be post transplant for three years on September 3rd, 2021

Caden will be post transplant on December 16th, 2022

To connect with Colton: [email protected]

To connect with Noah: [email protected]

For information about COTA:  https://cota.org/get-started/ 

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Diane Shader Smith’s daughter Mallory died from complications of cystic fibrosis 6 years ago. She was 25 years old. Diane initially published her daughter’s diary, "Salt in My Soul".  This book gave insight into how Mallory was feeling during her CF fight. Her deepest thoughts, and life lessons.

Diane Shader Smith  is now releasing a second book on behalf of her daughter, "Diary of a dying Girl".  

The title honestly may sound depressing, but as Diane explains, it is a wakeup call about our public health crisis and is an empowering story. Mallory's writing is so beautiful. And I can tell you, you won't be sad reading her book, you'll be inspired. In this podcast Diane explains that it's our job to raise awareness about Phage Therapy, and about the dangers of antimicrobial resistance (AMR). Something that everyone should become educated about, whether CF is your disease space, or not.

You can buy Mallory's book here:  https://diaryofadyinggirl.com    All the money goes to AMR research through Mallory’s Legacy Fund. 

You can also sign up, and tell your story at the Global AMR Diary: https://www.globalamrdiary.org

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Children’s Special Health Care Services (CSHCS): Have you heard of it? In the simplest terms, it is defined by the need for specialty care required for your child. It’s not a Medicaid program. Access to the program has nothing to do with your household income.  

The program has a lot of benefits. CSHCS covers transportation that can include airfare and/or lodging for conferences relate3d to your child's condition. Children Special Health Care Services has been around for almost 100 years.

Danielle Pitchford, with CSHCS is explains the program to us in great detail. Pitchford is the Outreach and Engagement Analyst and oversees promoting CSHCS services and resources while engaging with providers. She also works with other professionals who work with the target population, as well as families of children with special health care needs.  

To be transparent, Laura sits on the Michigan BioTrust for Health Community Values Advisory Board, which is part of MI DHHS. She also sits on a Family to Family volunteer group.  And, her daughters benefited from CSHCS until they moved out of state.

CSHCS website: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/general-information-for-families-about-cshcs

To learn more about CSHCS, take the free https://courses.mihealth.org/PUBLIC/home.html entitled "What is Children's Special Health Care Services." At this same site you will find another course entitled "CSHCS-Support Parent Training Course."

Call CSHCS Family Phone Line at  1-800-359-3722. 

Send an email to: [email protected]

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Shortly after we did this podcast Matt died from complications of cystic fibrosis.  With permission from his sisters, and dear friend Jennifer Bleecher (featured in this podcast) we are now airing this podcast to shine a light about what a great man Matt was. He speaks in this podcast about concern for his health.  Thanks to Jenn, his family and to Matt for all he gave to the world and especially the CF community. You are missed and will never be forgotten.

From his sisters Molly McBryan and Ame Austin:

"After an extremely long hard fought battle with cystic fibrosis, Matt McCloskey succumbed to this terrible disease on February 7th, 2024. He was a beloved husband, son, brother, uncle, and friend to many.   He will be remembered for a lot of things; one of which was his passion for the Take A Breather foundation in which he started.

The concept of Take A Breather started for Matt in 2012, when his own health battle with CF really took a turn. Knowing first hand what it is like to live with this disease, it was his dream and vision to offer families living with cystic fibrosis, a temporary escape, a breather, from the everyday struggles and emotional burdens of their disease. Matt put his heart and soul into this Foundation and is truly what drove him despite his own health issues.  Because of Matt, thousands of lives have been forever impacted due to his selflessness of wanting to bring joy to so many living with CF. He worked tirelessly and countless hours for the Take A Breather Foundation and the CF community.  Throughout the years, we heard from  many recipients/families the huge impact Matt’s mission had on their lives but we know there were countless others whom we did not hear from because he also worked quietly behind the scenes to motivate, answer questions, or just listen. There are no words to express the profound impact this loss will have on all those who knew and loved him and to the CF community."

This was written prior to his passing:

Matt and Jen have a great story to tell. 

Two people with CF, living their separate lives, and then they began working together to make a difference in the lives of people with CF.

Matt McCloskey was born in 1968 and grew up in Philadelphia, he has several other siblings, and one he never met because he died from CF at 2 months old.

In 2015 Matt received a lung transplant. Matt's in his 50's now, but his life expectancy was 6 years old.

He is currently running the Take A Breather Foundation.

Jen Bleecher, who is 52 years old, is the Community Outreach Volunteer for Take a Breather.  Jen is married, and has a 27-year-old daughter . Jen worked as a nurse for over 20 years. 

Jen had a double lung transplant, she has pivoted to volunteering some of her time helping with the Community Outreach initiatives, such as building relationships within the CF and broader communities, assisting in planning of fundraising events, and overseeing Take A Breather’s School Club program. 

To contact Matt and Jen: https://takeabreatherfromcf.org

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

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

Bonnell Foundation email: [email protected]

Thanks to our sponsors:

Vertex:  https://www.vrtx.com

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

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

As people with cystic fibrosis live longer, with a life expectancy currently at about 56 years old, many women with CF will be going through menopause.  I recently spoke to doctors at a hospital gathering, and recommended they speak to women with CF about menopause. They agreed. It's time. 

There is so little discussion and education about women and menopause in general. I recently listened to a podcast by Mel Robbins about menopause, and then saw menopause activist Ellen Dolgen on CBS News Sunday Morning, and reached out to her.

Dolgen is a best-selling author, speaker and Creator of Fearless Vagina - A Crash Course in Mastering Menopause. Her frankness in this podcast is delightful. It's All About Empowerment: My motto is: "Suffering in silence is OUT! Reaching out is IN!" Let's shatter the stigma surrounding menopause and support one another.

Sign up for: https://menopausecourse.ellendolgen.com

If you want to educate your employees, colleagues, or friends about menopause, look no further: https://ellendolgen.com/book-ellen/

Sign up for: https://ellendolgen.com/subscribe-to-ellens-news-flash/

IG: https://www.instagram.com/menopause_mondays/

FB: https://www.facebook.com/MenopauseMondays

Tik Tok: https://www.tiktok.com/@menopausemondays?

X: https://twitter.com/EllenDolgen

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Dr. Caleb Bupp. In my opinion. A scientific star.  He is a most humble human, but has every right to brag, but he never would. I do believe he's a genius.  You will love this podcast.  We talk about rare disease, his family and how he discovered and helped families who had no rare disease answers, until they met him! An absolute scientific rock star.  I met Dr. Bupp at a MichiBio event that introduced legislators, advocates and doctors to one another.  One of the best events I have attended and now I can follow Dr. Bupp and watch him change the medical world.

Here are his stats: Caleb Bupp, MD, FACMG – Division Chief, Medical Genetics and Genomics.  Dr. Caleb Bupp is a pediatric trained, board-certified medical geneticist with Corewell Health Helen DeVos Children’s Hospital in Grand Rapids, Michigan. He serves as the Division Chief of Medical Genetics and Genomics.  He is also an assistant professor at Michigan State University.  

He co-discovered a treatable genetic syndrome caused by ODC1 mutations now termed Bachmann-Bupp syndrome and is the clinical director of the International Center for Polyamine Disorders.  This was recently recognized by the New York Intellectual Property Law Association as their ‘Inventor of the Year’ for his patent related to this condition.  He helped create and run Project Baby Deer, a statewide initiative to provide access to rapid whole genome sequencing which resulted in Michigan Medicaid being the first to create an approval and carve-out payment policy. Dr. Bupp helped form the Rare Disease Network which provides support and education throughout Michigan. 

Dr. Bupp received his Bachelor of Science in molecular biology from Grove City College in Grove City, Pennsylvania and his medical degree from the University of Toledo College of Medicine in Ohio.  He completed pediatrics residency at the University of Louisville in Kentucky and his medical genetics training at the Greenwood Genetic Center in South Carolina.

Cheers to science and innovation.

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Cambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar  struggles.  Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada.  These two women connected, as you’ll hear, because their sons share the same mutation.

Rowland received  access to a CF modulator after a battle with her insurance company.  Her son’s mutation is not on the FDA approved list for Trikafta…. even though there is proof that Trikafta will work on her son's mutation.

To follow Cambrey go to @cfadvocacy

You can email her: [email protected]

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Did you know most states have programs for CF families, and they don’t have to do with your income? Michigan has one of the best programs in the Country. It’s called Children’s Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about it.

Brandi Berry, LLMSW is the Program Coordinator of the Kent County Children’s Special Health Care Services Program, Fetal Infant Mortality Review and the Healing Through Grieving: Pregnancy, Infant, Child Loss Program, all of the Kent County Health Department.   

Brandi has over 20 years' experience in the field of Child Welfare and Human Services.  She is also a Full Spectrum Doula and as well as an Adjunct Professor with the Grand Valley State University School of Social Work.  Brandi is the mother of three children, the oldest of which has rare disease, EOE.  She enjoys reading, traveling, and spending time with her children.   

To find out more about Children's Special Health Care Services program: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/the-family-center-for-children-and-youth-with-special-health-care-needs-family-center

Please like, subscribe, and comment on our podcasts!

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

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

Email us at: [email protected] 

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en