Podcast appearances and mentions of laura bonnell

What would you do if both of your children were diagnosed with a life-threatening genetic disease—and there was no support system in place for parents like you? In this inspiring episode, Katie interviews Laura Bonnell, a former Detroit news reporter turned full-time advocate and nonprofit founder. After both of her daughters were diagnosed with cystic fibrosis (CF), Laura transformed her grief and determination into the Bonnell Foundation, providing real-time support to families across the U.S. who are navigating life with CF. In this powerful episode, we explore: ✅ How Laura pushed for her daughter's diagnosis when doctors dismissed her instincts ✅ Why child life services were “among the best things” during hospitalizations ✅ What it's like raising two daughters with cystic fibrosis in the same home ✅ The emotional toll of pretending “everything's fine” as a medical parent ✅ How her foundation is providing financial relief, mentorship, and inspiration ✅ Why advocacy can take many forms—and how small actions can create significant change Whether you're a CF parent, a caregiver of a chronically ill child, or someone passionate about parent-led advocacy, this episode will move and motivate you. Timestamps & Key Topics ⏱️ [00:00] – The Power of Child Life Services How art, distraction, and support brought relief during hospital stays ⏱️ [03:00] – Meet Laura Bonnell From Detroit news reporter to cystic fibrosis advocate and nonprofit founder ⏱️ [06:00] – A Life-Altering Diagnosis How Laura's instincts—and persistence—led to a CF diagnosis after months of dismissal ⏱️ [09:00] – Fighting for Answers & Processing the News Pulling over mid-assignment to receive the call—and deciding, that same day, to keep moving forward ⏱️ [12:00] – Advocacy from the Start Speaking publicly just weeks after diagnosis and discovering the emotional weight of her new reality ⏱️ [14:00] – Life with Two Children with CF Navigating work, marriage, and hospitalization rotations while trying to maintain “normalcy” ⏱️ [16:00] – School Accommodations & Advocacy Wins How brochures, IV poles, and enzymes in every classroom made private school possible ⏱️ [18:00] – The Hidden Truths of “Being Fine” Why Laura never told friends how hard it really was—and what she wishes she could've said ⏱️ [21:00] – Building Community & Finding Strength in Other Moms How hospital garden meetups and phone calls with CF parents created safe spaces ⏱️ [23:00] – Founding the Bonnell Foundation How a calendar and a vision turned into a national nonprofit serving families with CF ⏱️ [26:00] – What the Bonnell Foundation Offers From financial assistance and college scholarships to CF masterclasses and bilingual resources ⏱️ [28:00] – “Don't F With Me”: Laura's Strength as an Advocate Why she'll knock on every door, from Capitol Hill to the hospital billing department ⏱️ [29:00] – Celebrating Her Daughters Emily's resilience through hospitalizations and marathon training Molly's fearless leap to study in London and become a sustainability changemaker Resources & Links

In this episode of Lead with Heart, I am joined by Laura Bonnell, the founder of The Bonnell Foundation and host of the Living with Cystic Fibrosis Podcast. Laura's journey into advocacy began when her mother's instincts clashed with initial medical skepticism, ultimately leading to a life-changing diagnosis for her daughter Molly. Fueled by a passion to help her daughter and others with cystic fibrosis (CF), Laura shifted from a journalism career to nonprofit leadership, combining her storytelling skills and commitment to advocacy.  Now, she's raising awareness, supporting families, and working with legislators to drive meaningful change for those living with CF.Our conversation delves into the challenges faced by CF families, the importance of storytelling in fundraising and awareness, and the role of nonprofit advocacy in creating meaningful change.In this episode:[02:46] Turning a challenging experience into a mission-driven career[06:11] Understanding cystic fibrosis and The Bonnell Foundation[08:38] The challenges cystic fibrosis families face once they receive the diagnosis[10:10] The Bonnell Foundation's funding model[11:55] The value of telling your story[14:10] The key components of ethical storytelling[21:24] Adopting an advocacy mindset to create impactful and sustainable nonprofit growth[27:37] Involving children in advocacy[29:09] The Bonnell Foundation's goals for the futureCONNECT WITH LAURALinkedIn: Laura BonnellInstagram: @laurabonnellWebsite: https://thebonnellfoundation.org/ Email: thebonnellfoundation@gmail.comSend Haley a suggestion or request via text HERE!My book, Sow, Grow, Lead is live on Amazon! It shares my journey of starting a nonprofit in Malawi and offers practical strategies to help nonprofit leaders turn visions into reality, and create meaningful impact As the fundraising engine of choice for over 80,000 organizations in 90+ countries, Donorbox's easy-to-use fundraising tools help you raise more money in more ways. Seamlessly embed a customizable donation form into your website that reduces donor drop-off with a 4x faster checkout, launch a crowdfunding or peer-to-peer campaign, sell event tickets, raise funds on the go with Donorbox Live™ Kiosk, and much more. Learn more at donorbox.orgCONNECT WITH HALEYHaley is a Certified Fund Raising Executive (CFRE), Stress Management Coach, and EmC trainer. She founded The Savvy Fundraiser, a nonprofit consulting and coaching business, and has experience with nonprofits in human services, homelessness, and youth sectors. Specializing in EmC, leadership, board development, and fundraising, Haley is dedicated to empowering nonprofit leaders to create thriving organizations.Instagram: @thesavvyfundraiser LinkedIn: Haley Cooper, CFREWebsite: thesavvyfundraiser.comProduced by Ideablossoms

CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a chronic illness and the hope brought by new therapies. In this conversation, Bob Coughlin shares his emotional journey as a parent of a child with cystic fibrosis, detailing the transformative impact of new treatments and the importance of community support. He discusses the hope brought by advancements in gene therapy and the future of cystic fibrosis treatment, emphasizing the need for continued advocacy and innovation in healthcare. The conversation highlights the emotional highs and lows experienced by families dealing with chronic illness and the importance of maintaining a positive outlook.Bob aligns real estate strategies with scientific business objectives. Which is very cool if you ask me. He's on numerous boards and is extremely involved in work, life and organizations.___________________________Bob Coughlin is a Managing Director at JLL and is the New England's Life Science and Healthcare Practice Group lead. He specializes in the representation of lab, GMP manufacturing and technology space. Robert delivers creative solutions that align real estate strategies with scientific business objectives. ExperienceRobert most recently operated as the President & CEO of the Massachusetts Biotechnology Council, where his mission was to advance Massachusetts's leadership in the life sciences to grow the industry. Robert has spent his career in both the public and private sectors. Before joining MassBio, he served as the Undersecretary of Economic Development within Governor Deval Patrick's administration, where he prioritized both healthcare and economic development issues and was a strong advocate for the life sciences industry in Massachusetts. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. Robert has also held senior executive positions in the environmental services, capital management and venture capital industries.Board InvolvementFranciscan Children's Hospital, Vice Chair, Board of TrusteesTeam Impact,  Member of National Board of DirectorsMassBio, Member, Board of DirectorsBA Sciences, Member, Board of DirectorsAnagram, Member, Board of DirectorsNuvara, Member, Board of DirectorsCystic Fibrosis Foundation, Chair, MA/RI Board of DirectorsSchwartz Center for Compassionate Care, Lifetime Board Member Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

February 13, 2025 ~ Laura Bonnell, President of The Bonnell Foundation: Living with cystic fibrosis, joins Marie Osborne to discuss how grants worth tens of thousands of dollars used to find cures for cystic fibrosis and other diseases are at risk of being lost.

In this episode of It Happened To Me, co-hosts Beth Glassman and Cathy Gildenhorn sit down with Laura Bonnell, a seasoned journalist with 25 years of experience in Detroit, founded The Bonnell Foundation in 2010 after her daughters, Molly and Emily, were born with cystic fibrosis (CF). Despite having ten siblings between them, Laura and her husband, Joe, had no idea they were carriers of the disease, as no one else in either family had been diagnosed with CF. Driven by her personal experience and professional expertise, Laura used her platform as a reporter to raise awareness about CF. Before establishing The Bonnell Foundation, she actively raised funds for the Cystic Fibrosis Foundation, participating in the Great Strides Walk fundraisers and speaking at CFF events. Bonnell also organized events like the first Celebrity Softball game with the Detroit Tigers' wives and launching the "Portraits of Cystic Fibrosis" calendars in 2003—both of which are integral to The Bonnell Foundation's fundraising efforts today.  Through her foundation, Laura continues to advocate tirelessly for those affected by CF, leveraging her journalistic skills to amplify the cause and support the CF community. Topics Covered: Understanding Cystic Fibrosis: What it is, how it affects the body, and the daily medical routines required to manage it. Personal Journey: Laura's experience with her daughters' diagnoses and the challenges her family faced. Advocacy Through Journalism: How Laura's skills as a journalist influenced her podcast, Living With Cystic Fibrosis, and her advocacy work. The Bonnell Foundation: From organizing the first Celebrity Softball game with the Detroit Tigers' wives to producing the "Portraits of Cystic Fibrosis" calendars, Laura discusses her foundation's mission and impact. Challenges and Progress: The evolving landscape of CF treatment, including the life-changing potential of medications like Trikafta. Community Support: How The Bonnell Foundation helps families navigate life with CF and fosters a sense of connection. Resources Mentioned: The Bonnell Foundation The Bonnell Foundation Facebook The Bonnell Foundation X The Bonnell Foundation Instagram Living With Cystic Fibrosis Podcast Connect with Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB).  Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Amanda Boone I would say is a rock star advocate in the CF and rare disease community.  She has cystic fibrosis and lives in Colorado.  She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state.We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you.Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda's health was declining. Then Trikafta, a CF modulator drug was approved by the FDA. This groundbreaking drug gave Amanda her life back and kept her from needing a lung transplantation. Amanda lost many friends over the years to CF and she carries a profound sense of gratitude for every additional day she lives.   Amanda co-founded CF United, a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Every member is either a patient or caregiver. Prior to CF United, Amanda served on the advocacy board Dell Children's Medical Center in Austin Texas and volunteered with the CF Foundation.When Trikafta faced affordability challenges through the Prescription Drug Affordability Board (PDAB) in Colorado, CF United emerged as strong advocates, successfully influencing decisions to maintain accessibility. CF United's advocacy goes beyond preserving access; they champion "The Independent Patient Voice." Amanda is committed to ensuring that all patients have access to the treatments they need, and that they get a seat at the table regarding decisions that affect their lives. In addition to advocacy, Amanda finds solace in her Colorado ranch with her husband son, two dogs and two horses. Amanda copes with her disease with laughter and realism.  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Laura Bonnell, a seasoned journalist with 25 years of experience in Detroit, founded The Bonnell Foundation in 2010 after her daughters, Molly and Emily, were born with cystic fibrosis (CF). Despite having ten siblings between them, Laura and her husband, Joe, had no idea they were carriers of the disease, as no one else in either family had been diagnosed with CF. Driven by her personal experience and professional expertise, Laura used her platform as a reporter to raise awareness about CF. Before establishing The Bonnell Foundation, she actively raised funds for the Cystic Fibrosis Foundation, participating in the Great Strides Walk fundraisers and speaking at CFF events. Bonnell also organized events like the first Celebrity Softball game with the Detroit Tigers' wives and launching the "Portraits of Cystic Fibrosis" calendars in 2003—both of which are integral to The Bonnell Foundation's fundraising efforts today. Through her foundation, Laura continues to advocate tirelessly for those affected by CF, leveraging her journalistic skills to amplify the cause and support the CF community. Key Takeaways:Seeing nonprofits as corporations is important for changing mindsets and driving growth. Nonprofits need to embrace the business aspects of running an organization, like budgeting, fundraising, and strategic planning.Leveraging your existing skills and experiences, even if they seem unrelated, can be incredibly valuable when starting a nonprofit. Laura's background in journalism and storytelling was crucial for building the Bonnell Foundation.Authenticity and personal connection are powerful tools for fundraising and advocacy. Sharing your authentic story and being open to building relationships can lead to unexpected opportunities and support.Persistence and a willingness to learn are key when facing challenges. Laura had to overcome her discomfort with fundraising but embraced it as a necessary part of her work, which led to the foundation's growth. “There is a stereotype or a feeling that people working for a nonprofit shouldn't make any money. I think it needs to change because it's really important that there are foundations that are helping people in the community.” “Just ask. The worst someone can say is, “No, we can't do that much, but we'll do this much.'” “Keep your willingness to share open, because there are so many people I've connected with about being open, and we all help each other. People relate to the same things.” - Laura Bonnell Reach out to Laura Bonnell at:Website: https://thebonnellfoundation.org/Facebook: https://www.facebook.com/thebonnellfoundationX: https://x.com/roadmaptocfInstagram: https://www.instagram.com/bonnellfoundation/#   Ask for and receive all you want, need and deserve without feeling rejected, ineffective, or pushy. Learn to manage your mindset, lead yourself and others more effectively and have the meaningful conversations that drive your most important work. Get your free starter kit today at www.theinfluentialnonprofit.com Connect with Maryanne about her coaching programs: https://www.courageouscommunication.com/connect Book Maryanne to speak at your conference:https://www.courageouscommunication.com/nonprofit-keynote-speaker

The NonProfit Spot: a wealth of resources and classes about how to grow your board, fundraise and make strategic decisions that will change the trajectory of your Foundation for the better.  They have an excellent newsletter too. Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all that she does. Heather and I have known each other for about 20 years, which seems impossible. Time does fly as they say.  Heather's husband Scott has CF.  Scott helped build  The Bonnell Foundation from the beginning as he was one of the Board of Directors.Heather brings more than 25 years' experience working throughout the public-private, philanthropic and nonprofit sector.  She's held executive-level positions as both Chief Administrative Officer and Executive Director and is well versed in economic and community development, education, government, social impact, and health and human services organizations. Heather oversees and supports the core branch teams with all aspects of client engagement and service delivery.If you have a nonprofit, or want to learn more about running a nonprofit, this could be the place for you.  They have classes and resources, along with a free newsletter that anyone can access. It's also full of local jobs if you're searching for a nonprofit job.NPS is a women-owned and women-led LLC founded with one goal in mind to assist small to mid-sized nonprofits with fund development, governance,operations and management services. With more than 80 years of combined service our core team is based in metro-Detroit and has spent their professional and personal lives in service to the community. Since 2013, we have amassed a client roster of more than 100+ organizations ranging from small and emerging organizations with budgets under $100,000 to large regional and national nonprofits with budgets ranging upwards of $30 million. The average client we serve has an annual budget of between one and $5 million.NPS: https://nonprofitspot.com  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

298: Do You See Your Nonprofit as a Corporation? (Laura Bonnell)SUMMARYThis episode is brought to you by our friends at Armstrong McGuire & Associates. Check them out for your next career opportunity OR for help finding an interim executive or your next leader. Are you running your nonprofit like a passion project – or a thriving corporation? Maybe you're struggling to balance mission-driven work with the organizational discipline needed for sustainable growth. In episode #298 of Your Path to Nonprofit Leadership, Laura Bonnell, founder of The Bonnell Foundation, shares her journey of transforming a deeply personal mission into a globally impactful nonprofit. She highlights the critical need for nonprofit leaders to adopt a corporate mindset - emphasizing strategic financial planning, program expansion, and board engagement as essential tools for growth. ABOUT LAURALaura Bonnell, a seasoned journalist with 25 years of experience in Detroit, founded The Bonnell Foundation in 2010 after her daughters, Molly and Emily, were born with cystic fibrosis (CF). Despite having ten siblings between them, Laura and her husband, Joe, did not know they were carriers of the disease, as no one else in either family had been diagnosed with CF. Driven by her personal experience and professional expertise, Laura used her platform as a reporter to raise awareness about CF. Before establishing The Bonnell Foundation, she actively raised funds for the Cystic Fibrosis Foundation, participating in the Great Strides Walk fundraisers and speaking at CFF events. Bonnell also organized events like the first Celebrity Softball game with the Detroit Tigers' wives and launching the "Portraits of Cystic Fibrosis" calendars in 2003—both of which are integral to The Bonnell Foundation's fundraising efforts today. Through her foundation, Laura continues to advocate tirelessly for those affected by CF, leveraging her journalistic skills to amplify the cause and support the CF community.EPISODE TOPICS & RESOURCES Ready for your next leadership opportunity? Visit our partners at Armstrong McGuireThe Code Breaker by Walter IsaacsonHave you gotten Patton's book Your Path to Nonprofit Leadership: Seven Keys to Advancing Your Career in the Philanthropic Sector – Now available on AudibleDon't miss our weekly Thursday Leadership Lens for the latest on nonprofit leadership

Are titles important? As a rare disease parent, we think you're worthy of a Ph.D.  Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done.As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old.  Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is thanks to her efforts.Laura Bonnell and Beth Vanstone have been advocating a total of more than 50 years combined, and they're not done yet. They need your help, on any scale that works for you (small or large).   Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

This week on the Change Maker: Laura Bonnell. Laura is a former journalist and the founder of the Bonnell Foundation, an organization devoted to raising funds and bringing awareness to individuals with cystic fibrosis. Laura tells us all about her journey and how she and her husband are helping the CF community to live longer, happier lives. Learn more about the Bonnell Foundation at: https://thebonnellfoundation.org/team/ To find more information on this show: https://www.augustapodcasts.com/thechangemaker Watch the video version on our Youtube channel here: https://youtu.be/TCbabymh1Pk

We're in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she's hosting this podcast with Laura Bonnell.Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American's thinking that medically everything is better in Canada, but that's not true. Many countries around the globe are struggling with the high cost of drugs for Rare Diseases, Canada is no exception. However, while we see industrialized countries around world looking at solutions to get rare therapies to patients quickly in an effort to maintain, improve and save lives, Canada remains stuck relying on a drug system designed to handle aspirin. Canada is the only country in the G7 without a national approach to rare diseases.In February 2023 the Federal government announced a Rare Disease Drug Strategy with a 1.4 billion budget over three yrs to support it. The expectation was that drugs for rare diseases would have a quicker pathway and that it would address the specific challenges of the rare community and fill some of the many gaps to access. Sadly, that has not been the case thus far. Beth says, “There are a lot of challenges for patients, it's very timely, there are a lot of gaps that will potentially harm patients.”  Touraj is one of the patients falling through the gaps.Touraj says his FEV1 is 35 percent, which means he is potentially looking at a double lung transplant. “It is shocking that in the next two to three years I might be getting to the point of needing a transplant. We're sad about it. My girlfriend is sadder about it than I am right now. I think of it as more of a reality.”  The hope would be access to a drug, despite his rare mutation, but the ability to try it.To connect with TourajInstagram: https://www.instagram.com/tojyla/Facebook: https://www.facebook.com/touraj.dehghan/Linkedin:  https://www.linkedin.com/in/touraj-manshadi Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

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.orgOr follow us on social media (see below) Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Healthwell is a foundation that helps people pay bills that impact 90 different disease groups. They cover what insurance does not.  The Bonnell Foundation will refer people to Healthwell when the financial need is greater than we can give, or if we don't cover a certain request for funds.  Approximately 40 to 45 percent of the CF community is helped by Healthwell. Healthwell pays $25 million each year for CF co-pays in therapeutic drugs. This could all change. There is a  lack of funding from Corporate sponsors. Healthwell sent out a letter that stated they will have to close their CF Treatment Fund to new and re-enrolling patients The CF Vitamin and Supplement Fund however will remain open.Answering our questions is Alan Klein, with Healthwell. Mr. Klein is the Chief Development Officer. He discusses his concern over the program that has helped CF patients since 2015.  The cause for concern is that there is an increased need by the CF community.  Current corporate donors gave what they could, they need more.  The worry is if they can't support the CF community, the need will triple to Foundations like ours, overwhelming most smaller Foundations.For more about Healthwell go to: https://www.healthwellfoundation.orgPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

The CF community is a small one. It's made up of 40,000 people with the disease in the U.S.  When you add two parents to the mix that's 80,000 parents, then there are grandparents, siblings, Aunt and Uncles, friends and you get the picture. We have a small, tight knit community.Laura Bonnell thought it was important that the Bonnell Foundation reach out to volunteer for the Pipers Angels Crossing for CF event.  It was the weekend of June 23rd, 2023.  It's so important that we support one another.This podcast playfully shows the camaraderie and strength of our wonderful CF community. Travis Suit, the Founder of Piper's Angels is a sweet soul and the father of Piper who has CF.  Recently Travis discovered he has CF (and his two sisters do as well).  In 2017 Travis started the paddle event.  Paddlers start in Bimini, Bahamas, and land on the Beach in West Palm Beach.  It was an incredible evet to witness.Hats off to everyone who participated.  I have so many new friends and it was great to see people in person, finally.Thanks to Beth Vanstone (producer) who met me in West Palm Beach from the Toronto area. I could not have done it without you.  We really are very funny in this wonderful podcast (and in general).  Thanks to editor Jon Gay for putting this podcast together as I recorded it in short segments on my iPhone. The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

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.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

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.comCF Bridge of Hope: https://www.cfbridgeofhope.orgThanks to our sponsors:Vertex Pharmaceutical: https://www.vrtx.comGenentech: https://www.gene.comViatris:  https://www.viatris.com/en

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.comGenentech: https://www.gene.comViatris:  https://www.viatris.com/en

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.orgEmail us at:  thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.com/Viatris:  https://www.viatris.com/en 

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 dental science through education and research. The Bonnell Foundation: thebonnellfoundation.orgEmail us: thebonnellfoundation@gmail.comColgate 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_1Delta Dental Website: https://www.deltadental.foundation/about-delta-dental-foundationDelta Dental All Smiles Shine App: https://www.deltadental.foundation/all-smiles-shine-appDelta Dental Foundation FB:https://www.facebook.com/DeltaDentalFoundationLinkedin: https://www.linkedin.com/company/delta-dental-foundation/  Twitter: https://twitter.com/DDFGivesBackThanks to our sponsors:Vertex: https://www.vrtx.comGenentech: https://www.gene.com/Viatris:  https://www.viatris.com/en

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=9EHPAAPMFMDonate to C.O.T.A for Jen's transplant expenses: https://cota.org/campaigns/COTAforJenWarriorComfort Finders Foundation: https://comfort-finders.orgFor 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/

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/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/

We're honored to talk with Dr. Ryan Thomas on this podcast.  Dr. Thomas is one of the Bonnell Foundations Advisory Council members. A Grosse Pointe native, Dr. Thomas is a wealth of information.  A Michigan State University Grad Dr. Thomas went to Wayne State Medical school.  He did his pediatric residency at Beaumont Hospital with a fellowship at Rainbow Babies in Cleveland.  Dr. Thomas is the CF clinic director at MSU.   We talked to Dr. Thomas about what research is going on at the clinic, and so much more.The Cystic Fibrosis Pulmonary Microbiome. October 2020  https://www.thoracic.org/about/ats-podcasts/the-cystic-fibrosis-pulmonary-microbiome.phpBacteriophages as a therapy for Cystic Fibrosis.  May 29, 2018 http://www.thoracic.org/about/ats-podcasts/bacteriophages-as-a-therapy-for-cystic-fibrosis.phphttps://msutoday.msu.edu/news/2021/no-more-mucus-trikafta?utm_campaign=spartan_winter_22&utm_source=mag&utm_medium=print&utm_content=inspire&fbclid=IwAR3c7huDb761GuMZEmvOr0__6Y6hG0wjwlfchABa9oswZFJ6M_VtkwI2IZMA restructuring of microbiome niche space is associated with Elexacaftor-Tezacaftor-Ivacaftor therapy in the cystic fibrosis lung https://www.sciencedirect.com/science/article/pii/S1569199321021317?via%3Dihub#sec0018For more information on The Bonnell Foundation find us at:  https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comThe 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/

Bijal Trivedi is a journalist and an author. She spent 8 years writing the book, Breath from Salt.  It's an in-depth look at how parents with CF children banded together to start what is now the Cystic Fibrosis Foundation. Trivedi weaves a beautiful story of all the players, from CFF President Bob Beall, to Joe and Kathy O'Donnell's involvement and all the other parents intertwined along the way.  The scientists contributions are worked into the book beautifully.  You'll learn things about CF you may have never heard before, and you'll be cheering on those scientists. Trivedi recently became Senior Science Editor at National Geographic.   When Trivedi began Breath of Salt in 2012 she was familiar with a drug that would only help 4 percent of the CF population, she realized how quickly science was moving in the field of CF, and decided to write about the history of CF, and all who had a role in getting us to where we are today (2022).  No one in Trivedi's family has CF, but we certainly consider her family.  Her book teaches us not only about the beginning of the CF Foundation, but also about the parents who built it.  Our stories (Laura Bonnell and Beth Vanstone) are very similar in many respects. This podcast features Laura Bonnell and Beth Vanstone (two CF mom's). Vanstone lives in Canada where she has worked tirelessly to make CF drugs more accessible not only to her daughter Madi, but to other CF families.  She is a huge advocate and friend of The Bonnell Foundation.Links:Bijal's book: Breath from Salt: https://www.amazon.com/Breath-Salt-Patients-Families-Medicine/dp/1948836378For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comSponsored by  https://www.fordfund.org/globalcaringmonth  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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/ 

Dr. Heather Walter is a CF Mom.  I first heard Heather speak at a Mom's retreat in 2021 (via zoom). I was so impressed with her I asked her to speak on this podcast.She is the Director of the School of Communication at The University of Akron and a professor of organizational communication.Dr. Walter's research is focused in the area of organizational communication and conflict, with a focuson health organizations and post-trauma health communication. She has published many journal articlesand chapters on this topic, including several case studies designed to show the applied nature ofcommunication research. She has a textbook in press and available in January 2022, titled “CasingConflict Communication.” She currently serves as a faculty fellow for the Center for ConflictManagement and works regularly with local community organizations and hospitals to improvecommunication skills and patient advocacy.Video promoting the podcast: https://youtu.be/RoXurtSA2R8Dr. Heather Walter Bio: https://www.uakron.edu/schlcomm2/faculty/bio-detail.dot?u=hlrosenFor more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comSponsored by  https://www.fordfund.org/globalcaringmonth  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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Steven Strickland is 28 years old and he's dealt with his own mortality more than he'd like. He was hoping to get a double lung transplant, but had to get rid of a deadly bacteria first (not once but 4 times).  Then, after waiting years to be listed and almost dying....he said, "No."  You'll hear why in this podcast.Today he's an employee at the Apple Store in Troy, MI and owner of his own company, Giant Helmet.Steven talks about the tough decisions he continues to make about transplant, mental health and his future. Stricklands company will donate proceeds to our Foundation and the Rock CF Foundation.  Strickland mentioned this in his podcast but made the official announcement after this podcast was released.  The hockey sticks he cells will help pay for the Giant Helmets he donates to teams like the Detroit Lions, Detroit Red Wings and Detroit Tigers. Check out his website to see how you can purchase one (and remember, donations will go to his two CF charities of choice)!For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/For more on Steven's Giant Helmets, you can check out https://gianthelmet.com/Vertex Pharma - the science of possibility.  https://www.vrtx.comSponsored by  https://www.fordfund.org/globalcaringmonth  To reach Lorna McEwan: https://www.facebook.com/lorna.l.mcewanThe 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/

61 year old Lorna McEwan lives in Saskatchewan, Canada where she is the oldest person living with cystic fibrosis.  She's a well known advocate, working to help CF families.  She lost two brothers to the disease and her son.  How can she even get out of bed in the morning? Is that what you're thinking?  Well wait until you meet her in this podcast!  She will inspire you, and lift you up.  She's an incredible woman sharing her journey with us in the Mums to Moms podcast(Beth Vanstone, Laura Bonnell and Patti Tweed).  It's all about empowerment!For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comSponsored by  https://www.fordfund.org/globalcaringmonth  To reach Lorna McEwan: https://www.facebook.com/lorna.l.mcewanThe original music in this podcast is performed by Marc Cotterell, who happens to have Cystic Fibrosis.   You can find him on Instagram here: https://www.instagram.com/m4rccotterill/ Or here on twitter: https://twitter.com/MarcCotterillOr on YouTube here: https://studio.youtube.com/channel/UCxPDZTZt3hBuyomkxLFttNw/videos/upload?filter=%5B%5D&sort=%7B%22columnType%22%3A%22date%22%2C%22sortOrder%22%3A%22DESCENDING%22%7DThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

Cystic Fibrosis Moms, who have never met, have a common bond: they know what a disease does to their child(ren), marriage and to their mental health. Laura Bonnell, Beth Vanstone and Patti Tweed all have one or more kids with the disease. The women came together to discuss all the challenges Moms (and Mums in Canada) face.  Their hope is to get Mom's talking to each other about all the challenges they face.  We will feature other Moms and clinical experts too.  We want your input so please shoot us an email: thebonnellfoundation@gmail.com   Thank you.For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comSponsored by  https://www.fordfund.org/globalcaringmonth  The original music in this podcast is performed by Marc Cotterell, who happens to have Cystic Fibrosis.   You can find him on Instagram here: https://www.instagram.com/m4rccotterill/ Or here on twitter: https://twitter.com/MarcCotterillOr on YouTube here: https://studio.youtube.com/channel/UCxPDZTZt3hBuyomkxLFttNw/videos/upload?filter=%5B%5D&sort=%7B%22columnType%22%3A%22date%22%2C%22sortOrder%22%3A%22DESCENDING%22%7DThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

International Biophysics Corporation (IBC)  creates innovative medical devices.  Their devices improve treatment therapies and patient outcomes.  For cystic fibrosis patients IBC created the afflovest.  Prior to the pandemic Bonnell Foundation founder, Laura BonnellI tried on a vest at the North American CF Conference (NACFC) in Nashville. President and Ceo David Shockley was show parents, patients and doctors the vest.  Shockley is a wonderful, down to earth person who is commitment to making life better for people with a disease or condition.  IBC also makes cools things like ozone generators for the space shuttle.  They make heart pumps, surgical tubing and more. In this podcast we are delighted to tell you that you'll hear from Neal Smith, Director of Marketing and Education for International Biophysics. Thank you.International Biophysics Website: https://biophysicscorp.com/For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comThe 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/

State Representative Jim Ellison is a long time friend to the Bonnell Foundation and it's founder, Laura Bonnell. Bonnell and Rep. Ellison met when she was a news reporter at WWJ and would call on Rep. Ellison for a comment, or she caught up with him on the road. Bonnell told Rep. Ellison about her Foundation, and the reason she started it was because her girls had the disease.  Rep. Ellison (and his wife Jodie) were all in, right away. Each year Rep. Ellison introduces a resolution to make May CF Awareness month.For more information on The Bonnell Foundation find us at https://thebonnellfoundation.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comTo reach Rep. Jim Ellison: https://housedems.com/jim-ellison/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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/For more information on Ashley's organization, Breathe Bravely, check out: https://www.breathebravely.org/

The Middle East CF association (MECFA) is working to make lives better for people cystic fibrosis. Christine Noke is the co-founder and CEO of MECFA. The stories you will hear in this podcast are sometimes gut wrenching and unimaginable. It will also inspire you to help raise awareness about CF everywhere, and make sure that someday everyone has a level playing field in healthcare. Noke says their goals are simple - to improve: Life expectancy and quality of life for CF patients regionally Access to CF Care Centers, Standards of Care Access to necessary drugs and equipment.Research and clinical trials in the region; Awareness about CF and Rare Disease in the region.  Let's help spread the word.For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/Find the Middle East Cystic Fibrosis Association here: https://www.mecfa.org/Vertex Pharma - the science of possibility.  https://www.vrtx.comThe 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/

Dr. Maggie Naguib works at Cairo Univeristy in Egypt and is a Professor of Pediatrics.  She talks to Laura Bonnell in this podcast, along with Dr. Samya Nasr from the University of Michigan hospital. Nasr is the Director of the CF clinic and professor of pediatrics.  Dr. Naguib shares her struggles as a doctor in Egypt who has helped diagnosed 1,000 people with cystic fibrosis.  This is thanks to the help of Dr. Nasr who travels back to Egypt once a year.  Dr. Nasr arranged for 4 sweat tests so that doctors there could start testing for the disease.  Families were losing multiple children to the disease without knowing why, until testing began.  Hear their challenges and success in this podcast.For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.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/KevinAllanMusicThis podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/

In this episode Laura Bonnell talks with Dr. Samya Nasr, Director of the CF Clinic at the University of Michigan hospital, and Professor of Pediatrics.  In 1997 Dr. Nasr began talking to  doctors in her native country of Egypt about the fact that many CF patients were not being diagnosed there.  They didn't believe her at first.  In 2007 Dr. Nasr convinced doctors it did exist after testing people with symptoms, and diagnosing 1,000.  She talks about the challenges of today (lack of medications), the challenge for the future (getting pharma to license drugs so they will be covered under insurance) and getting patients CF modulators. Dr. Nasr will also explain how desperate CF families are to see all of these challenges met.For more information on The Bonnell Foundation and how you can help fight CF in Egypt, find us at https://thebonnellfoundation.org/Sponsor: Vertex Pharma - the science of possibility. https://www.vrtx.comThe 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/

Bike to Breath is coming up quickly (Monday the 21st of September through Friday the 25th).  Two friends of the Bonnell Foundation, and the CF Community are getting on their bikes and riding from Boston to Pennsylvania to raise awareness about cystic fibrosis.  This is a Boomer Esiason Foundation event with CF Ambassador Jerry Cahill of New York getting on his bike, and joined by Emily Schaller (from Detroit).  Emily is the Founder of the Rock CF Foundation.

The Cystic Fibrosis community has been "social distancing" since before the term even existed.  Having a genetic disease that causes chronic and fatal lung infections causes a need for CF patients to remain six feet apart from one another.Laura Bonnell has two daughters with CF, and that motivated her to create The Bonnell Foundation for Cystic Fibrosis.  This September 26th, they will be hosting their annual Night of Hope.  Like many organizations, the event has gone virtual.  In this case, however, this format allows much more flexibility and inclusion among the CF community.Today, we preview the Night of Hope, with its numerous musicians, artists, and prizes available for attendees.We also take a look at what the medical community has learned from Cystic Fibrosis, and how those lessons have informed the battle against COVID-19.  Mask wearing, social distancing, and accelerated clinical trials have a lot in common with Cystic Fibrosis treatment.Resources:Night of Hope: https://thebonnellfoundation.org/event/night-of-hope-celebration/The Bonnell Foundation Website: https://thebonnellfoundation.org/Laura's Podcast, Living with Cystic Fibrosis: https://livingwithcysticfibrosis.simplecast.com/Michigan Motors Forward is produced by JAG in Detroit Podcasts in collaboration with Tanner Friedman Strategic Communications.https://jagindetroit.com/https://tannerfriedman.com/ 

In Jerry Cahill’s latest podcast, Laura Bonnell – mother to two daughters living with CF – shares her family’s story. From diagnosis to study abroad mishaps, Laura worries about her daughters constantly, despite the fact that they tell her not to be concerned all of the time. While her daughters choose to make their lives outside of the CF world, Laura chose to create a Foundation that allows her to interact with other CF parents on a regular basis – and she says it’s the best therapy possible for her. Tune in to learn more about Laura, her family, and how they deal with cystic fibrosis. This video podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Laura Bonnell is the mother of two children with Cystic Fibrosis and is the founder of The Bonnell Foundation. Laura joins the 1 Girl Revolution podcast to share her own life story; what cystic fibrosis is and more about her own family’s journey with CF; she talks about her daughters Molly and Emily and their individual journeys with CF; she talks about how they’re doing now and what they’re doing now; she shares her own journey as the mother of two children with CF; The Bonnell Foundation and what she and her family are doing to help other individuals and families with CF; resources for families and individuals with CF; and so much more! http://1girlrevolution.com/laurab/

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

Most of us wake up everyday with a big yawn and stretch. Imagine if that yawn was a struggle. Imagine if breathing was a daily concern. Jill's in studio guest on Dream Big Radio is Laura Bonnell, a mother of not one, but two daughters with the disease Cystic Fibrosis. Find out how Laura has maneuvered her life for the last 20+ years with what is her "new normal" and the foundation "The Bonnell Foundation - RoadMap to CF" she has created on behalf of all families who have been affected by this disease. It is so inspiring!

WWJ's Laura Bonnell - Combining academia and music

WWJ's Laura Bonnell - Oakland University academics and music

WWJ's Laura Bonnell - Are films harming our environment?

WWJ's Laura Bonnell - IT jobs

WWJ's Laura Bonnell - Oakland University Golden Grizzlies Graduate Program

WWJ's Laura Bonnell - Heart Research at Oakland University

WWJ's Laura Bonnell - Oakland University Executive MBA Program

WWJ's Laura Bonnell - Oakland University to host Town Hall Event featuring Brenda Carter

WWJ's Laura Bonnell - Celebrating 31 years of Michigan's top nurses at the Nightingale Awards for Nursing Excellence.

WWJ's Laura Bonnell - Guilt by Innocence at Oakland University -- Understanding Autism in the world of the criminal justice system

WWJ's Laura Bonnell - Hop Up P.T. at Oakland University