As the Year Closes: A Reminder That Advocacy Is Not One-Size-Fits-All

It’s New Year’s Eve—a time when many of us pause to reflect on the year behind us and the kind of future we’re hoping to build. In the skeletal dysplasia community, reflection isn’t optional; it’s necessary. The conversations we have, the narratives we amplify, and the assumptions we make about one another shape not just policy and research, but real lives. That’s why a recent article responding to disappointing Osteogenesis Imperfecta drug trial results deserves both acknowledgment—and a response.

A recent piece by Kara Ayers raised important and thoughtful points about research design, clinical trial endpoints, profit-driven pharmaceutical behavior, and what patients actually want measured when drugs are being studied. Much of that critique resonates. Research is complex and often imperfect. Pharmaceutical motives must be critically examined, not taken at face value. And patient voices are still too often treated as an afterthought. On those points, there is real alignment.

But buried within that article was a statement that cannot go unaddressed.

Without any outreach, conversation, or attempt to understand the organization or its work, the Little Legs Big Heart Foundation was characterized as

“what many consider a shell company staged as a skeletal dysplasia advocacy group whose primary aim is to encourage people to consider limb lengthening surgeries.”

That statement is not only inaccurate, it is harmful.

The Little Legs Big Heart Foundation was founded by a woman living with achondroplasia who has spent her entire life navigating the medical, social, and emotional realities of skeletal dysplasia. The foundation exists because too many individuals and families are left without guidance, access to specialists, coordinated care, or community when a diagnosis enters their lives. It exists to bridge gaps, not to push agendas.

The foundation does not promote limb lengthening. It does not recruit for surgery. It does not profit from medical decisions. It does not tell anyone what choices they should or should not make about their bodies or their children’s bodies. What it does do is defend choice; informed choice, nuanced choice, choice without shame, coercion, or gatekeeping.

And that distinction matters.

In rare condition communities, particularly within skeletal dysplasias, there has long been an undercurrent of “acceptable” and “unacceptable” narratives. Some lived experiences are welcomed. Others are dismissed, minimized, or framed as threats. People who pursue medical interventions are often portrayed as betraying identity, while those who don’t are framed as morally superior. That binary serves no one.

Advocacy is not a monolith. There is no single “right” experience of achondroplasia, Osteogenesis Imperfecta, or any rare skeletal condition. There are people who want drug therapies and people who don’t. People who choose surgery and people who never would or don’t need to. People whose primary challenges are fractures, and others whose biggest struggles are pain, fatigue, spinal stenosis, mental health, or access to care. All of those experiences are valid.

It is also worth addressing why long-standing organizations like the LPA may not have been sought out or included in certain research or guideline conversations. From the perspective of medical professionals, patients, and advocates, LPA has chosen not to engage with pharmaceutical companies and tends to approach most issues through a singular dwarf pride framework. While that stance resonates with some, it does not reflect the full spectrum of experiences within the skeletal dysplasia community. Many individuals and families have expressed feeling discouraged or shut out when seeking information about alternative medical management options, emerging research, or treatments that fall outside that framework. When advocacy spaces limit engagement or access to information based on ideology, people are left without the tools they need to make informed decisions about their own bodies and lives.

The Little Legs Big Heart Foundation centers quality of life. Period. That means access to doctors who know and understand skeletal dysplasia specialists. Access to mental health care. Access to education that accommodates bodies as they are. Access to accurate medical and social information so that families are not forced to rely on Google at 2 a.m. after a diagnosis. It also means acknowledging that different people will make different medical choices, and that those choices do not make them less authentic, less disabled, or less worthy of advocacy.

It is especially ironic that an article rightly calling out the exclusion of patient voices would, in the same breath, erase and mischaracterize an advocacy organization founded and led by someone living with one of the conditions being discussed and without so much as a conversation.

Disagreement is healthy. Debate is necessary. Critiquing pharmaceutical practices, research endpoints, and conflicts of interest is essential work. But flattening people or organizations into caricatures based on assumptions or community rumor undermines the very patient-centered values being defended.

The Little Legs Big Heart Foundation welcomes hard conversations. It welcomes criticism. It welcomes dialogue. What it does not accept is being labeled, dismissed, or reduced without engagement.

Rare condition spaces are small. The stakes are high. And the harm caused by misrepresentation is real.

If the goal is truly patient-centered research, ethical advocacy, and a future where rare does not mean forgotten, then there must be room for multiple voices, multiple paths, and multiple truths—without accusing those who don’t fit a preferred narrative of being something they are not.

These are not abstract debates. They are about real people, real bodies, and real lives.

And those deserve better than assumptions.

As this year comes to a close and a new one begins, one thing remains unwavering: the Little Legs Big Heart Foundation will never stop fighting for the skeletal dysplasia community. Advocacy is not one-size-fits-all, and it never should be. Our community is made up of individuals with different bodies, different needs, different values, and different paths forward and all of them deserve to be respected. We will continue to advocate for access, dignity, and quality of life. We will stand for informed choice, nuanced conversations, and patient voices that reflect the full spectrum of lived experience. And we will continue to show up—especially when it’s uncomfortable—because our community deserves advocacy that is honest, inclusive, and rooted in humanity.