Cystic-Fibrosis.com Community Year In Review

Since Health Union (the parent company of Cystic-Fibrosis.com) launched this online community, our goal has always been to elevate the voices of those affected by cystic fibrosis. Whether an article is written by a patient or a caregiver, the idea is the same: to share how CF affects each person it touches. We are fortunate to have a diverse advocate team who bravely share their unique experiences with CF.

Now, it has been a year since we officially launched Cystic-Fibrosis.com! In honor of all the hard work our team has put in, we would like to highlight their contributions to the cystic fibrosis community.

Patient perspectives

Each person with CF is on their own unique journey. What we've found, however, is that if we share our journey with others we will inevitably find someone who can relate. Due to the nature of CF, its rarity, and the infection prevention measures each patient takes, it is difficult--if not impossible--to connect with each other in person. Sharing with each other online helps us remember that we are not alone.

Each of our patient advocates shares the many ways that CF affects them. These are some of their stories:

• Dealing with CF’s Changes by Kenny Boutot
• Sometimes I Am Ashamed Of My CF Cough by Janeil Whitworth
• My Journey to Motherhood: A Mom with Cystic Fibrosis by Cheriz Kunkel
• Cystic Fibrosis Problems Unrelated To The Lungs: Weight Gain by Craig Konowal
• My CF Outlook On Life With Modulators by Emma Boniface

Shout-out to our caregivers!

Each November we recognize the cystic fibrosis caregivers in our community with official Caregivers Awareness Month. However, we definitely want to make sure we're representing caregivers and all their hard work year-round! This is why we bring family members onto our advocate team to share how caring for someone with CF affects them.

These are just a few of the articles we've published in the last year:

• The CF Parent Relationship by Misty Roussa
• Musical Chest PT for CF, or How I Bond with My Son by Steve Wilson
• A New Dream for Cystic Fibrosis – Enjoying the “Golden Years” by Joel Barlow
• The CF Caregiver: An Honest Morning Routine by Meghan Wilson
• Managing a Hospital Stay as a CF Caregiver by Noreen Tarletsky

Advocacy and awareness

Anyone involved in the cystic fibrosis community knows that advocacy and awareness are at the forefront. This year, we celebrated Cystic Fibrosis Awareness Month throughout the month of May with our theme "Far Apart But Close In Heart."

Thank you to everyone who has helped advocate for a cure for CF - you are doing great things! Here are what some of our advocates have said about CF advocacy and awareness:

• Ask The Advocates: How Are You Practicing Advocacy During CF Awareness Month? assembled by the Editorial Team
• We Will Always Celebrate CF Awareness Month by Janeil Whitworth
• Why Advocate? by Noreen Tarletsky
• 5 Ways to Be an Advocate During CF Awareness Month by the Editorial Team

Research

A big aspect of advocacy and awareness is research. Without research, we wouldn't have the amazing CF treatments that we have today. As the greater pool of CF research expands, we want to be sure we are contributing to it. This is why we conduct our Cystic Fibrosis In America survey, as well as assist with additional exploration through partnerships with other organizations.

• Cystic Fibrosis In America: What’s That? an internal survey
• Pain is Common & Constant: The Impact on Quality of Life a partnership with the U.S. Pain Foundation
• Take The Survey: Raising Children With Cystic Fibrosis a study conducted at Texas Woman's University
• Take The Survey: Living Independently With Cystic Fibrosis a study conducted at Bournemouth University

Recipes

Recently, we also dove into the world of recipes. Many CFers need to follow unique dietary restrictions, often needing to get extra calories, fat, and salt into their diets. Our advocates have been eager to share their favorite CF-friendly recipes with you!

• Sausage, Egg, and Cheese Crescent Roll Breakfast Casserole by Janeil Whitworth
• Penne Pasta in Alfredo Sauce and Chicken with White Wine by Marieliz Landa
• CF-Friendly Bulletproof Coffee by Janeil Whitworth

We appreciate you

Everyone's story is valuable. Thank you for bringing your own perspectives and experiences with cystic fibrosis to this community where, together, we can connect and grow. As we enter another year of advocacy, research, and support, we invite you to continue to engage with us.

Sincerely,

Your Cystic-Fibrosis.com community leads, Dana & Sarah

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