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Kevin Schaefer started the topic A message of hope for parents in the CF community in the forum Friends and Family of people with Cystic Fibrosis 1 week, 1 day ago
Read Jennifer Chamberlain’s latest column here.
Jennifer writes about learning about her daughter’s diagnosis when she was pregnant. She expresses the hardships of learning about CF, as well as how she and her husband adapted to it. She then provides a message of hope for other parents in the community.
Here’s an excerpt, “Being Claire’s mom…[Read more]
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Kevin Schaefer wrote a new item 1 week, 1 day ago
Read Jennifer Chamberlain’s latest column here. Jennifer writes about learning about her daughter’s diagnosis when she was pregnant. She expresses the hardships of learning about CF, as well as how she and h
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Kevin Schaefer started the topic Finding community as a person with CF in the forum Diagnosis Information and General Questions 2 weeks, 2 days ago
Lara Govendo writes about the importance of having community while living with CF in her latest column. Check it out here.
Here’s an excerpt, “That’s why making friends in our communities is crucial to our overall well-being. It’s validating to see others fighting the same rare disease as me. I’ve learned we can’t walk this journey alone, no…[Read more]
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Kevin Schaefer wrote a new item 2 weeks, 2 days ago
Lara Govendo writes about the importance of having community while living with CF in her latest column. Check it out here. Here’s an excerpt, “That’s why making friends in our communities is crucial to our ove
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Kevin Schaefer started the topic Encouragement for couples in the CF community in the forum Cystic Fibrosis and Dating/Relationships 1 month ago
Hey everyone, and happy Valentine’s Day!
Check out Jennifer Chamberlain’s latest column. She writes about how being a CF caregiver has impacted her marriage, and how she and her husband navigate the challenges.
Here’s an excerpt, “What we never waver on is that we’re a team, united for our daughter’s health. Sometimes we have to strip i…[Read more]
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Kevin Schaefer wrote a new item 1 month ago
Hey everyone, and happy Valentine’s Day! Check out Jennifer Chamberlain’s latest column. She writes about how being a CF caregiver has impacted her marriage, and how she and her husband navigate the cha
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Kevin Schaefer started the topic Community Resource-Piper's Angels Foundation in the forum Cystic Fibrosis Resources 1 month, 3 weeks ago
Hey everyone!
I wanted to share some information about this nonprofit organization. The Piper’s Angels Foundation provides the most socially innovative solutions to the cystic fibrosis community to empower each individual and family to live their greatest life possible. Read about them here on their website.
Have a great day!
You can…[Read more]
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Kevin Schaefer wrote a new item 1 month, 3 weeks ago
Hey everyone! I wanted to share some information about this nonprofit organization. The Piper’s Angels Foundation provides the most socially innovative solutions to the cystic fibrosis community to empower each
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Kevin Schaefer posted a new activity comment 4 months ago
Translation: Hello good afternoon, greetings to all!
My daughter is one year old, she has the gly542x mutation and the f508 delta, I wonder if anyone on this forum has that same combination of mutations. -
Kevin Schaefer started the topic 31 Days of CF: My Tattoos Helped Me Cope With Having CF in the forum 31 Days of CF 2022 10 months, 3 weeks ago
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]
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Kevin Schaefer wrote a new item 10 months, 3 weeks ago
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 e
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Kevin Schaefer started the topic Columnist Reflects on Overcoming Death and Second Chances in the forum Adults With Cystic Fibrosis 2 years, 9 months ago
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]
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Kevin Schaefer started the topic CF Columnist Publishes New ebook in the forum Adults With Cystic Fibrosis 2 years, 10 months ago
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]
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Kevin Schaefer started the topic Columnist Shares Story of Raising CF Awareness in the forum Adults With Cystic Fibrosis 2 years, 10 months ago
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]
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Kevin Schaefer started the topic COVID-19 and Post-Traumatic Growth in the forum Coronavirus (COVID-19) and CF 2 years, 10 months ago
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]
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Kevin Schaefer started the topic Motivation Monday: Setting Personal Goals in the forum Adults With Cystic Fibrosis 2 years, 10 months ago
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]
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Kevin Schaefer started the topic May is CF Awareness Month in the forum Cystic Fibrosis Resources 2 years, 10 months ago
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]
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Kevin Schaefer replied to the topic The thing I don't REALLY want to talk about, but feel like I should… in the forum Adults With Cystic Fibrosis 2 years, 10 months ago
Thanks for sharing Paul! I actually do PFTs as well for SMA, as my disease causes respiratory issues. It’ll be really interesting to see how COVID affects things like this and other medical appointments in the long run.
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Kevin Schaefer started the topic Book Recommendation: Disability Essay Anthology in the forum Adults With Cystic Fibrosis 2 years, 10 months ago
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]
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Kevin Schaefer started the topic Columnist Writes About Slowing Down in the forum CF and Depression and Anxiety 2 years, 10 months ago
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]
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