"Ever moment, every day is worth celebrating." Somer Love

Somer Love has spent her life choosing hope, dreaming big, and showing up fully for each day. Diagnosed with cystic fibrosis at just 11 months old, Somer has grown into a powerful and compassionate advocate for the CF community.

Guided by her belief that “Every moment, every day is worth celebrating,” Somer brings joy and purpose into everything she does. She often reminds others that “laughter is key,” a mindset that has helped carry her, and those around her, through the challenges of life with cystic fibrosis.

Through her work, Somer is dedicated to raising awareness, educating others, and offering hope, especially to families navigating a new CF diagnosis. In 2001, she founded Love to Breathe®, a platform created to educate, spread awareness about cystic fibrosis, and share love and connection around the world.

Big on birthdays, Somer’s parents made celebration part of her story in an unforgettable way. Every year, they placed Somer’s photo on a billboard. What began as a birthday tradition became something much bigger, raising awareness about cystic fibrosis in a way that stops people in their tracks. What that billboard did for awareness will give you chills. It’s something you will never forget. You’ll have to listen to the podcast to hear the story!

Somer knows that fighting CF isn’t something anyone can do alone. Her journey is deeply rooted in the strength of her support system and the community that stands beside her. She continues to advocate not only for her own future, but for a cure, for everyone living with cystic fibrosis.

Somer sums up the reason to advocate. This quote is on her website: "The goal isn't to live forever, but to create something that will"-Chuck Palahniuk

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Dr. Elizabeth Ames and Dr. Caleb Bupp are deeply committed to their patients. But like so many clinicians today, they’re spending an extraordinary amount of time battling insurance companies instead of practicing medicine.

Between prior authorizations, step therapy requirements, and outright coverage denials, physicians and their teams are buried in paperwork, often at the direct expense of patient care. Time that should be spent listening, diagnosing, and treating is instead consumed by forms, phone calls, and appeals.

Boston Globe reporter Jonathan Saltzman raised the concern and Dr. Ames brought it to my attention. The reporter talks about, a new program rolled out by Blue Cross Blue Shield of Massachusetts. The insurer says the initiative is designed to control rising healthcare costs for its 3 million members, noting that costs have increased by 30 percent since 2021. But, the program specifically targets physicians who bill for the most expensive visits. The reason for the increased expense, which is discussed in our podcast, is because doctors are choosing to spend more time with rare disease patients who have complicated health issues. They need to spend more time with complex medical needs patients than say, someone with a sore throat.

Drs. Ames and Bupp warn that this approach fundamentally misunderstands patient care, particularly for those with complex or rare conditions. “These patients don’t need less time; they need more” says Dr. Ames. Physicians argue that policies like this risk rushed appointments, strained doctor/patient relationships, and poorer outcomes. Nowhere is this more concerning than in the rare disease community, where delays and denials can be devastating.

Dr. Elizabeth Ames and Dr. Caleb Bupp talk about what this looks like in real life. As pediatric geneticists, they see firsthand how insurance barriers impact families already navigating diagnostic odysseys, uncertainty, and fear. Their work sits at the intersection of cutting-edge science and deeply human stories, and insurance interference often disrupts both. Dr. Ames, “Usually we get faxes saying, this has been denied and we start working on it. But the family gets a letter that the drug they need, the process is delayed by a “no”. We try and have good communication and say, “hey, we got this denial,” we’re working on it. But I think it’s deaths by a thousand cuts for the family. Families take the denial as, “I’m not worth of coverage, and that’s really hard”. Dr. Bupp says they have had to hire genetic counselors, a job that didn’t exist even 5 years ago, “We have a job description in our organization for it now because of the complexities that come with trying to unravel these insurance situations”.

We should also note that Dr. Ames, Dr. Bupp, and I all serve on the Rare Disease Advisory Council (RDAC) in Michigan. “I think rare disease advocacy, there is power in numbers. One person can be a huge difference maker, but it’s not one plus one equals two. It really exponentially grows, and I think with things like rare disease advisory councils, that gives you a better connection within your state, for state government and for advocacy. And I also think, or I hope, that it gives a place for an individual to plug in and that can then magnify and amplify. their voice so that they’re not alone”. Many states have RDAC’s, You can see if your state has an RDAC. For more on the Michigan RDAC

In this article and in the podcast we are not speaking on behalf of the council, but it’s important to understand why bodies like RDAC exist in the first place. Michigan is home to approximately one million people living with rare diseases, and the RDAC was created to ensure their voices, and experiences help shape policy. RDAC meetings are open to the public, and anyone in Michigan can participate and offer public comment. We hope you join our meetings via zoom (sometimes hybrid).

This conversation isn’t just about insurance policies. It’s about time, trust, and whether our healthcare system truly serves patients, especially those with the most complex needs. Speak up, share your story. Advocate. Make a difference, Mold the future, for future generations.

To look at the Everylife Diagnosis Odyssey https://everylifefoundation.org/delayed-diagnosis-study/ discussed in the podcast.  Everylife impact of diagnosis: https://everylifefoundation.org/burden-study/

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Innovating Medicine: How Science, Collaboration, and Curiosity Transform Patient Care

It is always inspiring to speak with true innovators on this podcast, the people who don’t just follow the science, but actively push it forward, turning ideas into real-world solutions that change lives. We are honored to welcome Dr. Jeffry Weers whose work has profoundly impacted the cystic fibrosis (CF) community and beyond.

Dr. Weers is a distinguished pharmaceutical scientist with more than 35 years of experience designing and developing novel drug-delivery systems. Throughout his career, he has focused on innovative treatments for CF, working across formulations, biologics, small molecules, and combination products. His achievements include an extensive patent portfolio and a remarkable publication record, but what truly sets him apart is his ability to translate ideas into treatments that improve patient lives.  I found that many scientists like Dr. Weers are soft spoken. They don't want to brag about their scientific successes, they just want their work to speak for itself.  Dr. Weers is so darn smart!  He won't toot his own horn, so I must!  He's a great person who is filled with so much hope for the future.

One of Dr. Weers’ most notable contributions is the invention of the Tobi Podhaler, a device that transformed how inhaled antibiotics reach the lungs. For people living with CF, this innovation has meant more effective, easier-to-administer treatment, significantly improving daily quality of life. His work exemplifies the power of scientific innovation to directly impact patient care.

Dr. Weers delves into both the breakthroughs and the challenges of drug development. He shares insights into the ongoing hurdles of developing inhaled medications, including inhaled insulin, and emphasizes the regulatory obstacles that can slow the introduction of new anti-infectives. Yet, he remains optimistic about the future, highlighting the role of collaboration among scientists and the potential of AI to enhance medical imaging, diagnosis, and patient outcomes.

Dr. Weers also stresses the critical importance of addressing infectious diseases in CF patients and the responsibility of the scientific community to advocate for better treatments. Beyond his professional achievements, he reflects on the personal side of being a lifelong scientist, sharing how interests like farming provide balance and perspective in a demanding career.

I particularly loved recording this episode because Dr. Weers has a rare ability to make complex science accessible, explaining the “why” behind innovations in a way anyone can understand. For anyone curious about the intersection of science, medicine, and human impact, this conversation is both enlightening and inspiring.

To watch a fabulous video that explains the creation of what it takes to get medicine into the lungs, view here: You Tube link: https://www.youtube.com/watch?v=fwglM8Zo4m0

Inhaled drug delivery in CF/ YouTube link: nother YouTube link: https://youtu.be/iV27VdieQbo

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Daelyn James, is someone who understands the power of owning your story. Diagnosed with cystic fibrosis at just four years old, she remembers what it felt like to go from a carefree childhood to one filled with treatments, doctor visits, and a reality she wasn’t ready to face. For a long time, Daelyn kept her CF hidden because she was worried it would change how people saw her or limit what she could do.

But in high school, everything shifted. Daelyn made the brave decision to stop running from her diagnosis and start embracing it as part of who she is. And that choice changed her life.

Now 25, she proudly lives with CF and uses her experiences to raise awareness, connect with others, and offer hope. Her message is simple but powerful: even in the hardest moments, there is strength, there is goodness, and there is always a way forward.

I’m so excited for you to hear her story.

To connect with Daelyn visit her on IG: https://www.instagram.com/daelyn_j/

To connect with Somer Love her IG is Love to Breath: https://www.instagram.com/lovetobreathe/

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Running for Time: Chad Eddy’s Mission Against Cystic Fibrosis

For Chad Eddy, the fight against cystic fibrosis isn’t abstract, it's personal. He’s the proud uncle of two nieces born with CF. One is still living.

When his goddaughter was born in 1998, (he asked their names not be used) the second of his nieces diagnosed with cystic fibrosis, Chad’s world changed. He quickly realized that simply walking in charity events or asking friends and family to donate wasn’t enough. Love demanded action. Hope demanded movement.

He wanted to do more. He wanted to be part of the generation that finds the cure. It's his motto.

In 2017, Chad’s heart broke when one of his nieces lost her courageous fight with CF. But even in grief, he found his purpose. He made a promise to her, and to his living niece, and to every person living with CF, that he would keep running toward a cure.

Now, Chad isn’t running for a medal. He’s running for time. Time for those who can’t breathe freely. Time for families waiting on a cure. Time for the breakthroughs that can change everything.

His mission has taken shape in an extraordinary endurance challenge: running 6.5 miles every 6.5 hours for 65 straight hours , all to raise $65,000 for cystic fibrosis research.

This is not a race. It’s a test of heart, exhaustion, and purpose, run one step, one story, one promise at a time.

Already, more than 80 donors have stepped forward, contributing over $11,000 to support Chad’s mission. But this is no longer just a personal challenge, t’s a movement.

Through a short documentary film, that movement, and its heartbeat, will be captured forever.

For everyone still fighting for breath, Chad runs because every moment counts. And he won’t stop until cystic fibrosis is a disease of the past.

For more information and to donate:: https://fundraise.cff.org/roseup2025/65milesin65hoursforCF 

To see the trailer for Generation: Cure: https://youtu.be/YyI_rNXuNAI?si=pk_tBY3NZkdtdfTn

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When Jennifer joined New Hope in 2018, she didn’t just take a job — she stepped into a calling. What began as a role coordinating outreach and events quickly became a mission to change how communities understand and support grief. With her compassion, creativity, and drive, Jennifer helped New Hope grow from a local resource into a lifeline for families across the region. Her leadership was soon undeniable — first as Interim Executive Director, then officially taking the helm in January 2020 — guiding New Hope through seasons of transformation, expansion, and profound impact.

Under Jennifer’s direction, New Hope has launched new loss-specific grief groups, expanded programming, and reached grievers in more communities than ever before. She continues to build on her expertise through national training with the National Alliance for Children’s Grief and other organizations, ensuring that every program New Hope offers is trauma-informed, compassionate, and deeply effective.

Jennifer’s community involvement runs wide and deep — she serves on multiple local health and wellness councils, partners with school districts, and facilitates leadership and family development programs, includingThe Leader in MeandThe 7 Habits of Highly Successful Families. She’s also been invited to speak and moderate at events like Hegira Health’sFocus on Zerosuicide prevention conference, sharing insights on resilience and healing.

Today, Jennifer not only leads New Hope but helps train other organizations on how to support those in grief. She’s currently helping design age-specific grief curriculum for students — empowering young people to understand loss, express emotion, and find hope. She’s seen the full circle of healing firsthand: those once supported by New Hope returning to offer that same compassion to others, creating a community where no one grieves alone.

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A black leather jacket, black hoop earrings, black T-shirt and pants. You may visualize a rock star, and Colin Hemez is a rock star of sorts, but he actually works in a white coat, a doctors coat. Yes, he’s a scientist.

Dr. Hemez brings a remarkable blend of science, creativity, and purpose to the fight against cystic fibrosis. Colin was born in France and raised in the high-desert town of Los Alamos, New Mexico, an environment steeped in scientific discovery. Summers interning at Los Alamos National Laboratory sparked his early fascination with how innovation can change lives.

At Yale, he explored the intersection of engineering and art, studying biomedical engineering alongside art history to understand both the precision of science and the elegance of design. But it was a research trip to the Arctic University of Norway that set his path in motion. While building mathematical models of antibiotic resistance, a challenge many people with cystic fibrosis face, Colin discovered his true calling.

Today, he’s a PhD student in Dr. David R. Liu’s renowned laboratory at Harvard, working at the cutting edge of gene editing for cystic fibrosis. Every day, Colin is pushing boundaries, imagining a future where science doesn’t just treat CF but has the power to rewrite its story.

We had to so much fun talking in this podcast. Born in France we talk about Colin’s wonderful siblings and parents. They’re all incredibly smart and making a huge difference in our world.

Outside the lab, Colin reflected on the grounding role of art, music, and outdoor exploration, coping mechanisms that keep him connected to the world he’s trying to impact. Looking ahead, he’s both hopeful and driven: gene editing for cystic fibrosis is no longer a distant dream but a rapidly approaching reality with global implications. His aspirations are bold, but so is the science.

In his view, the future of CF research depends on collaboration, imagination, and staying rooted in why the work matters: to bring healthier, longer lives within reach for every person living with this disease. We sure love his passion for science. You won’t want to miss this Amazing Podcast. 

Disclaimer: "The opinions expressed by Colin Hemez are his own and are not to be taken as representative of the positions of the Broad Institute, Harvard University, or the Cystic Fibrosis Foundation."

To watch Colin's PhD  https://drive.google.com/file/d/1HizIGiqGdKDgIifT7HF9t0UDVgv0tOKE/view

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Breath to Breath Film that celebrates the contributions by Dr. Michael Welsh

It’s always such a privilege to feature CF icons on the podcast. Over the years, we’ve been fortunate to host some of the most influential names in cystic fibrosis research, including Dr. Francis Collins, the former director of the NIH and one of the authors of the Human Genome Project, and his longtime friend Dr. Mitch Drumm, who was working on his doctorate when the CF gene was discovered back in 1989.

I actually saw Mitch recently at a dinner, and as many of you know, Dr. Collins continues to be a tireless advocate for good science and for sharing its importance with the world.

And now, we add another legend to that list: Dr. Michael Welsh from the University of Iowa.

Dr. Welsh tells his story beautifully in the University’s film Breath by Breath: Living with Cystic Fibrosis. In it, he describes how his curiosity about the CFTR protein led to groundbreaking discoveries that ultimately laid the foundation for CF therapies, the very treatments that have changed (and saved) thousands of lives, including the lives of my daughters.

Dr. Welsh’s career is extraordinary, spanning decades of research, mentorship, and discovery. He’s the Carver Professor of Internal Medicine and Molecular Physiology and Biophysics at the University of Iowa, and from 1989 to 2024, he served as an Investigator with the Howard Hughes Medical Institute. He currently directs both the Pappajohn Biomedical Institute and the Cystic Fibrosis Research Center.

We’ve linked both his full bio and the film in the show notes, and I highly encourage you to check them out. His accolades could fill pages, actually, an entire book! We had so many laughs too in this podcast! So much fun. You’ll really enjoy it.

Dr. Welsh shared insights not only into his scientific journey, but also the heart behind the work. He recently received the Lasker Award for pioneering CF research that led to life-saving therapies, a recognition that celebrates decades of persistence, curiosity, and collaboration.

We discussed so much:

• How his team began unraveling the mystery of the CFTR protein and what that breakthrough moment felt like
• What it’s like to see patients thriving because of the treatments that grew from that work
• Why the University of Iowa decided to produce Breath by Breath, and what the film means to him personally
• What new treatments and discoveries he’s exploring now

Hearing Dr. Welsh describe the intersection of science, hope, and humanity is powerful. You can tell that for him, this work isn’t just research, it’s a mission.

As the documentary shows, CF isn’t just a disease studied under a microscope. It’s a lived experience for patients and families, one that now includes real hope thanks to the breakthroughs made by scientists like Dr. Michael Welsh.

Biography:

Dr. Michael Welsh is the Carver Professor of Internal Medicine and Molecular Physiology and

Biophysics at the University of Iowa. From 1989-2024, he was an Investigator of the Howard

Hughes Medical Institute. He directs the Pappajohn Biomedical Institute and the Cystic Fibrosis

Research Center.

Dr. Welsh obtained an MD and completed an internal medicine residency at the University of

Iowa. He then trained in pulmonary medicine and research at the University of California, San

Francisco and physiology at the University of Texas, Houston.

Dr. Welsh and his colleagues discovered that the protein affected in cystic fibrosis is an anion

channel, elucidated its functional mechanisms, discovered ways that mutations disrupt function,

and showed that mutations can be rescued. This work led directly to development of medicines

that target CFTR and are highly effective for most cystic fibrosis patients. To understand disease

pathogenesis, he and his collaborators developed cystic fibrosis pigs, the first mammal, other

than mice, in which a gene was targeted to generate a disease model.

His clinical activities focused on pulmonary diseases. He has trained many physicians and

scientists and received the Distinguished Mentor Award, University of Iowa Carver College of

Medicine.

To watch the film, click here:  https://uihealthcare.org/cystic-fibrosis-research-iowa#documentary

To learn more about Dr. Welsh: https://internalmedicine.medicine.uiowa.edu/profile/michael-welsh

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What does it mean to live with cystic fibrosis (CF) in Amish and Mennonite communities, where many families don’t use phones, computers, or even electricity? For some, this means relying on handwritten letters for communication, trying herbal remedies before conventional medicine, and declining treatments like lung transplants or in vitro fertilization because of cultural and religious beliefs.

Update State CF Center (Syracuse, NY) Social Worker Lejla Bush, who has worked with the CF community for over a decade, shares how Amish and Mennonite families navigate CF while staying true to their traditions. She explains the unique challenges, from financial hurdles without health insurance, to hospital care that must adapt to cultural practices, and the vital role of community support in helping families face this disease.

Most importantly, Lejla reminds us that while the cultural context is different, Amish and Mennonite parents hold the same hopes, fears, and love for their children as any other family affected by CF.

This episode opens a window into the powerful intersection of culture, medicine, and resilience.

We did a Q and A with some people in the Amish and Mennonite communities. Thanks to Lejla for sharing so much information about the Amish and Mennonite communities.

To see a letter of Q and A with one of the Amish patients click here: https://thebonnellfoundation.org/wp-content/uploads/2025/09/AmishLetter.jpg

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Summer Bauder is a remarkable woman whose story embodies compassion, perseverance, and global impact.

Summer’s journey began as a stay-at-home mom managing a bustling household a life filled with love, chaos, and purpose. But everything changed when her brother-in-law’s daughter was diagnosed with cystic fibrosis (CF). What started as a family connection to CF grew into a calling that now spans continents.

Today, Summer serves as a key volunteer for CF Vest Worldwide, a nonprofit that provides life-changing airway clearance vests to people with CF who can’t afford them. Her days are filled with cleaning, sorting, and shipping donated vests to families across the globe, and sometimes, personally delivering them.

From India to Colombia to Ecuador, Summer has met families whose gratitude reminds her daily why this work matters. She shares powerful, heartwarming moments, like watching a child take easier breaths for the first time, and the challenges of navigating logistics, language barriers, and limited resources.

Next up? Honduras, where Summer delivers 10 vests to families in need.

Balancing her large family and international volunteer work hasn’t been easy, but Summer says her experiences at home prepared her for the organizational and emotional demands of this mission. Her story is a reminder that one person — one family — can make a global difference.

This episode shines a light on the power of community, family support, and the ripple effect of kindness.

If you’d like to support Summer’s efforts, CF Vest Worldwide is currently accepting donations of child-sized garmentsused to distribute vests to children with CF around the world.

What's her connection? Her why?  It's her brother, Josh Bauder.

To see more about Summer's work, watch her video: https://youtu.be/sHSB9kIp060

To contact CFVWW: [email protected]

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