Kevin Schaefer

This is Megan Maurer’s (@sweetstarfire) story.

Megan writes about how having tattoos has helped her cope with CF. She shares how much getting tattooed has benefitted her mental health and allowed her to express herself.

Here’s an excerpt, “Tattoos have helped me reclaim my body by allowing me to add my own “scars” in the form of beaut…[Read more]

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]