As life continues to shift and evolve, so has our community. Each of us has navigated these changes in our own way, and along the way, our needs and connections have shifted too. I want to take a moment to reflect on the journey we’ve been on, acknowledge where we are now—both as individuals and as a community—and explore how we can continue to grow and support one another moving forward.
The past few years have brought significant changes within the CF community. The introduction of Trikafta has been life-changing for many people living with CF, shifting the course of what was once considered an inevitable decline. With improvements in health, energy, and independence, many of us found ourselves navigating a new landscape. Roles that once centered around constant caregiving evolved, leaving some of us feeling uncertain about where we fit.
At the same time, not everyone benefited equally from these advancements. For members of the transplant community—or those who, for medical reasons, could not take Trikafta—this shift was often isolating. As some celebrated newfound freedom, others continued to face serious health challenges, creating a divide within our community that we hadn’t anticipated. We see you; we hear you, and we want to rebuild this community in a way that ensures every journey—whether through transplant, Trikafta, or other paths—is honored and supported.
Then came COVID, adding another layer of complexity to our lives. What once felt like a lifeline—virtual meetups, shared stories, and digital connections—became yet another screen to stare at in an already overwhelming world. Virtual fatigue set in, making it harder to engage with one another. During this time, we continued to host our monthly spouse calls to and add new episodes to podcast in an effort to keep the community connected. But as life grew more demanding, participation in these efforts began to wane. And we understand—sometimes, it’s all just too much to keep up with.
In the quiet that followed, it may have seemed like Project CF Spouse had lost its spark or that we had stepped back from the passion that originally brought us together. The reality is, life simply got in the way, as it often does. One of our board members welcomed a new baby, while another started and completed nursing school. But even though things have been quieter, this community still matters to us as much as it always has. We’ve taken this time to reflect on how best to serve you, and now, we are ready to reignite the connection that makes this community so unique and valuable.
As we move forward, we want this journey to be something we build with you, not just for you. To truly understand the needs of our community, we need to hear from you. What do you need most right now? What challenges are you facing? How can we ensure this community feels like a place where you belong and thrive? What are things that you would like to see for spouses and partners in this community? Your voice is essential—without it, we can’t create the kind of meaningful support network that we know is possible.
In the past, you may have seen surveys from us that didn’t lead to visible change. I want to be transparent about that. While we had ambitious plans, the response to those surveys was significantly lower than expected, which made it challenging to take the next steps. But we’ve learned from that experience, and we’re committed to doing things differently moving forward. Your input isn’t just data to us—it’s the foundation for creating a space where you feel truly heard and valued.
One of the projects we really want to develop is a registry for spouses and partners. Currently, in the United States alone there are over 8,000 spouses and partners in the CF community. This registry will help us collect the data we need to advocate for resources that reflect the real challenges we face—whether emotional, financial, or something not related caregiving. It will provide us with the insights necessary to build programs that truly serve our community’s needs. However, this effort can only succeed if we come together to share our experiences.
The truth is, we are the only real resource dedicated to the spouses and partners of people with CF. That’s why the work we’re doing matters so much. There are countless resources for people with CF, but very few spaces focus on the unique challenges that come with loving someone who lives with this condition. Project CF Spouse exists to fill that gap—because your journey, your struggles, and your victories matter, too. We believe in the power of this community to uplift, support, and inspire one another, but we can only grow if we do it together.
Our goal is to rebuild this community in a way that is intentional, sustainable, and responsive to what YOU need. Whether that means new events, different kinds of support, or simply a space to feel understood, we want to make that happen. But we can’t do it alone. This community has always been about US—the collective strength and insight that only we can provide for each other.
We are still here, and we are still as passionate about this project as we
were when we started. Now, we want to move forward with you, hand in hand, to build something even more meaningful. Thank you for being here, for sticking with us through the quiet, and for being part of this journey. Together, we can create a community where every spouse and partner feels seen, valued, and supported—because you belong here, and this work matters.
With gratitude and hope,
Megan Barker
Founder, Project CF Spouse
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