Living With Cystic Fibrosis

I am so proud to bring you our CF partners from around the Country, (Siri Vaeth, CFRI, Inc., Lee Becker and Jerry Cahill, Boomer Esiason Foundation, Brian Callanan, CFLF and Emily Schaller, Rock CF Foundation) we do our individual work with our respective CF Foundations and come together as part of the CF Engagement Network (CFEN).  CFEN focuses on issues that impact our entire CF communities. Our thanks to Ryan Gough for getting us together.We had candid conversations in this podcast. It is from the perspective of three people with CF (Emily Schaller; 38 years old, Brian Callanan;44 years old; and Jerry Cahill, 63 years old) along with two CF Moms (myself and Siri) and Lee Becker, Boomer Esiasons' best friend, CF advocate and partner in the Boomer Esiason Foundation.  He is the glue and reality check of our group.Siri comes to us from California, Lee and Jerry from their respective homes in NYC, Brian from Florida, Emily and Laura from Detroit.  The one person who couldn't be on this podcast is the "smartest

The reason the Bonnell Foundation began was because I had two daughters with cystic fibrosis. This episode is my girls perspective. They live life to the fullest.  They both traveled to Nicaragua for a mission trip (different years with their High School class), studied abroad in Spain (Emily) and England (Molly).  I decided not to let my fear run their lives. They have missed party's, school trips, events, school, college days and taken it in stride. They have skied with a picc line, been hospitalized in England with no family to care for her, but friends rallied. Emily's daily life is often disrupted by pain from the disease, but she soldiers on. They have been through hell, and now, the pandemic. Their truth, and wise words are in this podcast.I realized parents needed both emotional and financial support.  There were a lot of much needed fundraising being done by foundations for research, but in 1994, not much for parents.  That's when I decided it was important to start my Foundation.  It wasn't until 20

When you think about cystic fibrosis, you probably think about the patient, and the parents who take care of them until they're adults.  But what about a patient's spouse or partner? When a person starts dating someone with CF they probably don't know the patient's history, nor can they grasp the complications of the disease right away.  A person with the disease has had a lifetime to get used to it. The same may be true of their parents. But for a partner, it is an entirely different story.  In this podcast, meet the wonderful Megan Barker, the Director of Project CF Spouse. Her husband has CF.  Rob Ronnenberg is in charge of the group's strategic planning, and his wife has CF. I shared some tears with these two wonderful people; I am so glad to know them. Their foundation is off to a great start. 

Resources:Translate Bio WebsiteThe Bonnell FoundationEmail The Bonnell Foundation

Resources:The Bonnell FoundationEmail The Bonnell FoundationMichigan Department of Health and Human Services  

For more information please visit the following sites:https://thebonnellfoundation.orghttp://www.childrenshospital.org/directory/physicians/u/ahmet-uluerhttps://www.facebook.com/thebonnellfoundation/

Just over a week after Trikafta (Vertex Pharma) was approved by the FDA, five months ahead of schedule, five thousand people from the CF community were in Nashville, TN to attend the North American CF Conference. As the Founder/President of The Bonnell Foundation and mother of two daughters with cystic fibrosis I was thrilled to interview National Institute of Health (NIH) Director Dr. Francis Collins.Resources:Dr. Collins Speaks at NACFCThe Bonnell Foundation WebsiteThe Bonnell Foundation Facebook 

Karma was at work when Musician Jill Jack called me to say she wanted me to meet a singer/musician named Kevf. His voice was amazing she told me, and by the way, he has cystic fibrosis. I shouldn't be surprised anymore that everything CF comes my way. But I was! We have a big Gala event coming up September 28th, 2019 and I wanted Kevf to sing at our fundraiser. He agreed. His story and music will give you chills and make you smile. Links: Kevf on YouTube Kevf on Facebook The Bonnell Foundation Website Bonnell Foundation Night Of Hope - Saturday, September 28th

The movie Five Feet Apart was inspired by Claire Wineland. The movie’s main character, Stella, showcases Claire’s charismatic and fighting personality. In this honest, raw, and often emotional conversation, Laura talks to her mom, Melissa Nordquist Yeager, about Claire, Five Feet Apart, and life without her daughter. Claire Wineland lost her battle with Cystic Fibrosis in September of 2018, before the release of Five Feet Apart. It's a frank, touching and inspirational conversation. Melissa also discusses her ever changing role as the founder and Executive Director of the Claire's Place Foundation which donates to children and families affected by Cystic Fibrosis. For more about the movie Five Feet Apart, click here. To learn more about Claire's Place, click here.

When Beth Sufian was born with Cystic Fibrosis in 1965, there were no CF treatments and no prescriptions for enzymes that she could take to digest her food. Beth has dealt with many CF challenges along the way, and it made her stronger and molded her into the attorney she is today. Sufian lives in Texas where she's practiced law for the past 25 years, many of those years with her husband. She focuses on health law so she can help CF patients and people with other chronic illnesses navigate the complex legal system. She was recently in the news again for helping a 22 old woman with CF who lost her Social Security benefits because that agency felt her health had improved. Sufian will talk about the Megan Willis case, special needs trusts (do you need them?) and clear up legal misunderstandings about CF. She'll also talk about her life, growing up with Cystic Fibrosis. For more information on the CF Legal Information Helpline, click or tap here. The hotline number is (800) 622-0385 You can also email CFLegal@s

Thirty-nine year old Dylan Mortimer embraces God, life and his family while dealing with the reality of waiting for a second double lung transplant. An artist in New York City, Dylan makes beautiful colorful images of lungs and cells by using glitter. His story is inspiring and emotional. Dylan talks about his brother and mother who both have cystic fibrosis. You'll also hear him talk about the controversial movie Five Feet Apart. For more information on Dylan and his art, check out his website here. You can also find him on Facebook.

In our first episode, Laura Bonnell is joined by Michigan CF Moms Sam and Kim. Laura has 2 daughters in their 20's with Cystic Fibrosis, Sam's 6 year old son Ethan is battling the disease, and Kim shares memories of her daughter Maggie. Between these three women, we take a journey through a CF diagnosis through an entire life with the disease. As you'll hear, Living with Cystic Fibrosis can create many wonderful moments and shared experiences. However, no two journeys are the same. Learn more about The Bonnell Foundation here.

Both of Laura Bonnell's daughters have Cystic Fibrosis. Laura founded the Bonnell Foundation in 2010 to bring CF patients and their families together with resources to fight this disease. It may sound strange, but Laura sees the disease as a blessing. Join us as we choose joy.