At last year’s FOP Family Gathering, something extraordinary happened in a room filled with moms. There were no expectations of musical perfection. No prior songwriting experience required. Just stories — raw, honest, real — and a willingness to share them.

Out of that space came the song “Never Alone.” Listen here >

Created in partnership with the Madison, Wisconsin-based trio Gin, Chocolate & Bottle Rockets (GCBR) — Beth Kille, Jen Farley, and Shawndell Marks — the song captures the heart of the FOP community: fierce love, shared resilience, and an unshakeable commitment to hope. 

Because of you, families living with FOP have the opportunity to gather, connect, and create memories like this together. 

A Space to be Heard 

The Family Gathering’s small-group workshops for moms, dads, adult men, adult women, and teens have become increasingly intentional spaces for connection. The Moms’ Songwriting Workshop offered something uniquely creative: an opportunity to process the FOP journey as a family member through music. 

“As we walked into the songwriting workshop, I was excited,” shares Suzanne Hollywood, who helped plan the experience. “Music is a huge part of my life. Sharing an uplifting experience like creating a song with other moms was therapeutic.”

Tiffanie Williams, another FOP mother and participant, echoes that sentiment: 

“None of us had had songwriting experience, but GCBR listened to our stories and pulled words and phrases that symbolized the journey. They then put melody and music to our ideas to make a really special song and performed it for us at the final dinner. Not a dry eye in the house! It was such a unique way to create something heartfelt together and help us express the joys and challenges in a creative way.”

Moments like this are possible because people like you believe human connection is just as valuable as scientific progress. 

GCBR didn’t come in to “teach” songwriting . . . they came in to hold space. 

“For us, it wasn’t so much about the songwriting as it was about holding a safe space for everyone in the room,” Jen Farley of GCBR shares. “That space already carried so much love, exhaustion, resilience, and hope. Our role became helping translate that shared sense of purpose into words and music.” 

A Heart of Hope

The opening lines of “Never Alone” are intimate and protective: 

“What do I do when I want you to just be?

Wrap you in blankets with love, seems the only way.” 

Immediately, we are placed inside a mother’s heart — the instinct to protect and let her child simply exist without the weight of rare disease. There is a tenderness in the desire for the world to “hear your laughter and know your name.” It’s not just about survival. It’s about being seen. 

As the song unfolds, one word becomes its rhythmic anchor:

“Hope, hope, hope.”

Hope is what brings us together. Hope means we’re never alone. Hope keeps us strong, and hope is tied to the ultimate goal — a cure. 

The lyrics move from a personal place to the collective:

“We're at different points on the same path. 

Navigating a shifting reality. 

Brilliant minds and giant hearts building, creating, and guiding our global family.”

In those lines, the song widens its lens. The FOP journey is not isolated to one family or one moment. It is a global movement of families, researchers, clinicians, and advocates, each at a different place but traveling down the same road. And it’s your support that helps bring this global movement together. 

One of the most powerful realizations for the songwriters came during the workshop itself. 

“The song wasn’t actually about the mothers,” Jen reflects. “It was about their children. The kids were clearly leading the way, and the parents saw themselves as part of that journey, helping pave a path for others who will come after them. That shift — from ‘this is what we’re going through’ to ‘this is how we’re helping move things forward’— was incredibly powerful.”

More Than A Song

Songwriting offered something conversation alone cannot. 

“Music lets you say things without needing to fully explain them,” Jen shares. “Songwriting creates a container where many emotions can exist at once. And once it’s shared, it becomes collective — you’re not holding it alone anymore.”

That collective experience culminated at the Family Gathering's final dinner, when Gin, Chocolate & Bottle Rockets performed “Never Alone.” The room was filled with families at different points on their journeys — newly diagnosed parents, seasoned advocates, teens finding their voice, researchers committed to discovery.

And because of supporters like you, they could be there together. 

As the chorus rose — “Hope, hope, hope, you’re never alone” — it wasn’t just lyrics anymore. It was a declaration. 

There were tears. There was quiet recognition. There was pride.

And there was unity. 

“Never Alone” is more than a beautiful melody. It’s a living reflection of the FOP Community’s shared purpose: unity, strength, resilience, and the hope for a cure.

Your generosity helps turn deeply personal experiences into shared moments of connection like this one. Moments that remind every parent wrapping their child in blankets of love, every teen finding their voice, every researcher working late in the lab, that they are a part of something bigger. 

They are a part of a global family. 

And because of you, no one has to walk this path alone. 

Michelle Davis

Executive Director

IFOPA

P.S. If you would like to hear about our plans for 2026, please reach out to me at [email protected] or + 1 (816) 809-2772. I'd love to set up a call with you or, if we'll be in your community, a visit.