How Bernadette Dimaano Is Changing Lives Through Digital Advocacy
From a single vulnerable post to reaching tens of thousands across the globe, one New Yorker with FOP is proving that sharing your story can change lives.
When Bernadette Dimaano was turned away from a restaurant in New York City—not because she had done anything wrong, but because staff mistook the effects of her fibrodysplasia ossificans progressiva (FOP) for intoxication—she faced a choice many people in the rare disease community know well: stay silent, or speak up.
She chose to speak up. And the world is listening.
Bernadette, 30, lives with FOP and was diagnosed at age seven. But it wasn't until 2023—when that incident forced the conversation into the open on her popular NYC food blog—that she began sharing her experience with FOP publicly. By October 2024, she had made the full commitment to open advocacy, developing a strategy to show the world, in her own words and on her own terms, what life with FOP truly looks like.
“I hope people feel inspired and motivated to start their own advocacy journey.
We all have a voice we can use to educate and spread awareness.”
— Bernadette Dimaano, FOP Community Advocate
The Power of the Personal
What sets Bernadette’s content apart is its radical authenticity. No professional camera crews. No polished scripts. Just Bernadette, her phone, and a commitment to showing the full, unfiltered arc of life with FOP.
“I just wanted it to feel personal,” she explained during a recent conversation for IFOPA’s Rare Disease Day campaign. “I wanted people to really see from my eyes what I was going through.”
One video in particular captures a year-long span of her life—beginning with footage of Bernadette driving herself to work and doing her own hair, and ending with scenes in which she needs help getting in and out of bed. The contrast is striking and intentional. It confronts one of the most persistent misconceptions about FOP head-on: that progression is static, that those living with the condition “look fine.”
That video has now been seen by nearly 50,000 people.
Reaching Across Continents
When Bernadette first began posting, she thought her audience would be friends who simply didn’t know the extent of her condition. She never expected to hear from a mother in Peru.
But just days before hosting her first FOP fundraiser, a Facebook message arrived from Fernanda, a mother whose daughter had just been diagnosed with FOP. She didn’t know what to do next. She had found Bernadette’s posts
“I never knew that they would reach other continents,” Bernadette said. That connection led to a welcome call with the IFOPA team and the family receiving vital support during an incredibly difficult time—a chain of events made possible entirely because one person decided to post her story.
Fernanda’s family is not alone. Bernadette has since heard from numerous individuals and families around the world who found her content at a pivotal moment—at diagnosis, during a flare-up, or simply in a moment of feeling unseen.
Bringing the FOP Community to TikTok
Beyond her own channels, Bernadette has been a driving force behind the IFOPA’s expansion onto TikTok—the organization’s newest social platform. From the moment she joined the IFOPA community, she was clear: “We need to make a TikTok. That needs to happen no matter what.”
The data backs her instinct. On her own personal account, the only videos to surpass 10,000 views are those about FOP. Rare disease content resonates on TikTok in a way that few other platforms can match, reaching people who may never have heard of FOP—and connecting them to a community they didn’t know existed.
The IFOPA’s TikTok account is now live. You can follow us at @cure_fop to see the latest content—including the inaugural video made by Bernadette herself.
A Message for Those Considering Sharing Their Own Journey
For anyone in the FOP community—or the broader rare disease community—who is thinking about sharing their story, Bernadette’s advice is simple and consistent: don’t wait for the perfect moment, the perfect equipment, or the perfect words.
“Just post it,” she says. “Tell your story. You never know where it’s going to go, or who it’s going to be seen by. I guarantee there’s going to be at least one person who reaches out and says your story reached me.”
In a community as small and geographically dispersed as the FOP community, digital storytelling is not just a nice-to-have—it is a lifeline. It is how a family in Peru finds they are not alone. It is how misconceptions are dismantled. It is how empathy is built, one view at a time.
Bernadette Dimaano is proof that you don’t need a production budget or a media platform to make a difference. You need courage, a camera, and the willingness to let people see your truth.
Follow Bernadette on TikTok at @bernaaad7 and Instagram @nyc_foooodie. If you are interested in sharing your own FOP story, reach out to IFOPA Marketing Manager Emily Barnes at [email protected]. We would love to support you!
