Hello world!

Hey everyone! Hope you all had a safe and relaxing holiday weekend.

Check out Brad’s latest column here. This is a great and moving piece about gleaning lessons from death. Brad reflects on almost dying before his transplant, and how he’s grown from this experience.

This passage sticks out to me: “While death isn’t romantic, it can be [Read more]

Hey everyone! Hope you’re all doing well.

I wanted to let you all know that our very own Bailey Vincent recently published a new ebook! You can download it for free here on her website. I read it the other day, and it’s fantastic.

This book is part memoir, part novelization/stream of consciousness. It’s not at all filled with medic…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

Check out Lara Govendo’s latest column here. She writes about CF awareness month, and what raising awareness means to her. This is a concept she’s wrestled with throughout her life, particularly in regards to telling friends and acquaintances about CF. Every time she “educates” som…[Read more]

So I’m sure you’re all pretty tired of hearing about COVID. Paying attention to the news right now is exhausting.

However, I did want to share this column about COVID-19 and post-traumatic growth. The author, Brianna Albers, is a writer for one of our sibling sites. She’s been writing about mental health coping mechanisms, speci…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

Today, I wanted to start a conversation about setting personal goals. Obviously, it’s an unusual time to even think about this subject. Between the COVID-19 pandemic and just trying to stay healthy, most of us aren’t focused on the future.

Still, I actually think it’s a great…[Read more]

Happy May everyone!

As many of you are aware, May is cystic fibrosis awareness month. Even though it’s a strange time, I think there are still ways we can raise awareness for CF and other rare diseases. We may not be able to have in-person fundraisers right now, but we can still do things online and on social media. On that note, check o…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

I wanted to share this book with you all. This is a collection of essays from the New York Times disability series. The book’s contributors include people living with quadriplegia, chronic illnesses, blindness, and more. The idea is to give people with a plethora of visible and i…[Read more]

Hey everyone! Hope you all are doing well.

Check out this column from Brad, which came out earlier this year. Oddly enough, Brad wrote this right before the COVID-19 pandemic forced everyone to stay home and slow down. How’s that for irony?

That said, this is an extremely poignant column. Like Brad, I’ve been a lot healthier in rec…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

I wanted to ask if anyone here does online therapy. With all of the stress and anxiety in the world right now, it’s as good a time as any to focus on mental health. And since we’re all on lockdown, online therapy is a great alternative to in-person appointments.

There’s one s…[Read more]

Hey everyone! Hope you’re all staying safe and healthy out there.

Check out Lara Govendo’s latest column here. She writes about her life before and after her double-lung transplant, and all of the emotions in-between.

I especially like this passage: “Breath is something that most take for granted, given its innate nature. You’ll find a d…[Read more]

Hey everyone! Congrats on making it through another week of quarantine.

So I wanted to ask you all about using TeleMed for medical services. TeleMed is a popular resource for live medical answering services for patients and healthcare providers. Especially with the COVID-19 pandemic, I was wondering how many of you are using TeleMed for…[Read more]

Hey everyone! Congrats on making it through another week of quarantine.

For a little inspiration, check out Bailey’s latest column. She writes about the empowerment that comes with having a pre-existing condition like CF. Whereas society tends to view people in rare disease communities as weak, Bailey flips this concept on its h…[Read more]

Hey everyone! Hope you’re all hanging in there.

Check out Brad’s latest column here. This is an exceptionally poignant column about tending to one’s mental and emotional health. I think a lot of us use the phrase “I’m fine” in such an arbitrary fashion. Brad writes a great reminder that it’s ok to not be “fine” all the time.

This passage…[Read more]

Hey everyone! Hope you all are staying safe and healthy out there.

So I wanted to share this video with you all that I came across a few months ago. This is a fascinating video, in which a group of people with disabilities discuss topics like ableism, dating, and living with a disability. The idea is to show that within disability…[Read more]

My apologies for the wordy title of this post. I tried to summarize the idea of Bailey’s latest column.

I found this piece to be really provocative. In spite of everything going on with the COVID-19 crisis, the upside is that we’re able to slow down a bit. Bailey writes about how she’s now able to spend more time with family, and can do vir…[Read more]

Hey everyone! Hope you’re all staying safe and healthy out there.

So while many people are on edge and filled with anxiety right now (myself included), I wanted to share a more positive perspective. In her latest column, Wendy wrote about how she’s experiencing an unexpected calmness in the midst of isolation. Whereas she felt ove…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

So since we’re all stuck at home right now, I was wondering if anyone had any good podcast recommendations. Since I work from home anyway, I listen to a lot of podcasts during the day. My favorite is called Beautiful Anonymous, a conversational show hosted by comedian Chris G…[Read more]

Hey everyone! Hope you all made it through this week ok. Everyone managing quarantine life?

So I wanted to share Wendy’s latest column with you all. I found this piece to be both enlightening and relatable. When the first FDA-approved treatment for my disease went on the market, I had similar feelings as Wendy did about Trikafta. She writes…[Read more]

Hey everyone! Hope you’re all staying safe and healthy out there.

So with everything going on in the world, I thought I’d do a lighter post about entertainment recommendations for quarantine. I’m a huge pop-culture guru, so I’m handling quarantine ok. This is just my personal list of book, movie, and Spotify recommendations. I’m leavi…[Read more]