Lungs of Love: A Cystic Fibrosis Children’s Book

04/10/2025

On Monday, April 7, our dear friend Chelsea lost her husband of eleven years, Michael. Mike passed away from complete respiratory failure due to complications from cystic fibrosis, needing a second transplant, and COVID-19. His was a battle both long and courageous, fought with dignity and grace, much of it within the sterile walls of a hospital.

In recent weeks, the illness demanded everything, and Chelsea gave it: her time, her care, her career, and ultimately, her partner.

In the wake of this loss, Chelsea stands at a difficult crossroads. After being Michael’s full-time caretaker over the past several months, she now must face the uncertainty of rebuilding a life alone. There are practicalities; bills, mortgage payments, groceries, insurance, even the loving care of two beautiful pets who were once part of a family of two. But beyond the ledger of life lies the quieter burden of grief, which is heavier and more unknowable.

If you are able, please consider donating to Chelsea to help ease her financial burden during this terrible, terrible time.

Mike was a wonderful man. I always thought of him every time I had more than a reasonable amount of sparkling water in our fridge - which is often. He was funny, loved animals, movies, adventure, dancing and celebrating others, which I think is such an important part of what made Mike, Mike. Most of all, he loved Chelsea and the life they worked so hard to have.

Please consider donating if you are willing and able 💜
https://www.gofundme.com/f/support-chelsea-as-a-tribute-to-michael/cl/o?attribution_id=sl:1db6a8b2-07c4-40d4-8134-93cb7d02ce0e&lang=en_US&utm_campaign=fp_sharesheet&utm_content=amp13_c-amp15_c&utm_medium=customer&utm_source=copy_link

06/12/2024

12/30/2021

Two of our faves! 💜💜

As we close out 2022, we are thrilled to welcome our 2022 Ambassador, Mary Delany- Hudzik! Mary is ready to cheer you on all year long! Read a bit about her and get excited for all that's to come:

"I was diagnosed with CF at birth due to having meconium ileus. I was hospitalized at 2.5 years old for pneumonia and then did not require hospitalization again for 5 years when I had surgery for a bowel obstruction. After that, most years, I was in the hospital annually through high school. With the invention of the Vest, I had the freedom to go away to college at Stockton College in NJ, where I earned a bachelors in biology. Drawing inspiration from my personal experiences, I decided to get my masters in genetic counseling. After graduate school, I married my college sweetheart, Erik. I have also worked part time as a genetic counselor for 15 years. As I have gotten older my health slowly decline, and I developed severe hearing loss due to repeated treatments with Tobramycin. In May 2018, I developed an aggressive lung infection, went into respiratory failure, and was put on a ventilator. On June 10, 2018, I had an emergency lung transplant. I've had a rocky road since my transplant, with multiple bowel obstructions, pneumonia, and post-transplant lymphoma. Next year, I will turn the big 4-0 and am grateful for the great strides made in CF research with the help of the CFF." - Mary (pictured here, with her husband, Erik)

11/04/2021

Yesssssss!!!!!! 💜💜💜

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and I joined the fight. It has been incredible to see that fight come so far in my lifetime.

Yesterday at NACFC the median age of survival for CF was raised to 50! This is huge news and such a positive, amazing stride in getting us closer to a cure. What does raising the median age of survival mean? Well to to me it means…

•Children with CF have a real opportunity to live longer lives… They will not know CF like I have and nothing makes my heart more happier than that.

•Parents of newly diagnosed children are going to have such a better story to tell than my parents. Their experience will still be devastating to hear but not so negative and grim. The future is bright!

•This means that these drugs and medical advancements that we all work so hard for are working and it means there are more options out there. When I was diagnosed there were NO drugs available. We have come so far!!!

•It means that all the hard work and time put in spreading awareness, participating in drug trials, and fundraising by the generations of people with CF that came before us, those of today, and those of tomorrow is really getting us closer and closer.

I will stress that this is the MEDIAN age of survival… despite all the incredible medical advancements the reality is that we are still losing people to CF at an early age. So the momentum of fundraising, research, and clinical trials CANNOT slow down!

I’m so grateful the CF Foundation is committed to developing transformative therapies for all people with CF, no matter what mutations they have. We are so close, but, we aren’t there yet and we won’t stop until everyone with CF has a cure! Breathe out Love! Xo❤️

08/05/2021

Super promising news coming out of University of California San Diego School of Medicine! Solid organ transplant patients (including kidney, liver, lung, and heart) experienced an almost 80 percent reduction in the incidence of symptomatic COVID-19 compared to unvaccinated counterparts during the same time.

This is way better news than expected after a previous antibody study showed abysmal results. Check it out!

UC San Diego researchers report that solid organ transplant recipients who were vaccinated experienced an almost 80 percent reduction in the incidence of sympto

06/22/2021

💜💜💜

We are so excited to have partnered with Woojer and Area 23 on this amazing CF tech! Congrats to the whole team on this beautiful project!


・・・
The Pharma Awards for 2020/2021 have just been announced, and we have some amazing news to share!

Out of 509 entries in the category, SICKBEATS by Woojer, the world's first music-powered airway clearance vest, has won Gold in Pharma for Product Innovation, Bronze in Pharma for Digital Craft - User Experience, and.... the Grand Prix in Pharma!!!💥

Our incredible partners at won Healthcare Agency of the Year, and won Health Network of the Year.

Extra special thanks to for making this possible!🙌

We could not be more pleased that our technological innovations will help kids with Cystic Fibrosis all over the world. When the best tech meets the best creative minds to solve real-world issues, magic happens!🙏

06/15/2021

Three years post-transplant and we celebrated with a half day of tests ! This morning, Chris did blood labs, a DEXA Scan for bone density, an EKG on his heart, an abdominal CT, and, of course, a PFT. Great results so far but we’re looking forward to the Zoom follow up next week.
What a wild, wonderful, and terrifying year it has been!! We are so grateful to our families, friends, the CF community, the medical team at UCSD, and Chris’s heroic anonymous donor.
Thank you for another year of joy and LIFE! 💜💚💙

05/07/2021

Hoping for a better result from the antibody study after the second dose. This is not a surprise, after some information circulated earlier this year, but this is hard to read nonetheless.

For most people, COVID-19 vaccines promise a return to something akin to normal life. But for the hundreds of thousands of Americans who have a transplanted organ, it's a different story.

03/02/2021

Three years ago today, Chris got his first dry run call for lungs. Luckily, the final call came just a couple months later but this was a very stressful day for everyone.

“So, this happened yesterday ... I did get a call from UCSD Thorton Hospital with an offer for a donor lung match. And yes, I totally made that face. Unfortunately, the lungs were declared too risky for transplant and I went home with all my original parts. These "dry runs" are just a part of some people’s storied transplant history. Next time, hopefully. ☺”

02/13/2021