HDBuzz Is Officially Independent: What This Means, and Why It Matters

As of January 1, HDBuzz is officially out on its own! Cue your celebratory party poppers as we enter this new chapter with an excited (and nervous!) smile. After lots of preparation, planning, and behind-the-scenes work, HDBuzz has become an independent nonprofit organisation. This marks a major milestone for our team and for the global Huntington’s disease (HD) community we serve.

But independence doesn’t mean we did this alone. Quite the opposite. In this article we want to share what this transition means, express our deep gratitude to the Huntington’s Disease Foundation (HDF) for their fiscal sponsorship and all of our other financial supporters, and explain how you can help support HDBuzz as we take on new responsibilities in this next chapter.

Thank You to the Huntington’s Disease Foundation and our Sponsors

Since February 2024, HDBuzz has operated under the fiscal sponsorship of the Huntington’s Disease Foundation. This relationship made our work possible.

HDF provided essential infrastructure that allowed HDBuzz to exist and grow: financial oversight, legal and administrative support, and stability during periods of transition and expansion. And perhaps the largest benefit was that they allowed us to use their charitable status so that we could maintain 501c3 status while waiting for the IRS to process our paperwork. Fiscal sponsorship may sound dry, but in practice it meant that scientists could focus on writing, editing, translating, and explaining HD research, all while knowing the organisational foundations were solid.

Just as importantly, HDF believed in the value of independent, plain-language science communication for HD families long before it was obvious or easy. That trust gave HDBuzz the space to grow into the resource it is today. For that, we are tremendously thankful.

We are also deeply grateful to our sponsors and supporters who helped sustain HDBuzz during this period, including charitable foundations, partner organisations, and, most importantly, the HD community itself. Every person who clicked the donate button, shared our work, or contributed what they could played a real role in getting HDBuzz to this moment. Thank you!

These individual donations, large and small, were not just financial support; they were a vote of confidence in the idea that the HD community deserves clear, unbiased, and accessible science. HDBuzz exists because readers believed it should.

We are profoundly grateful to HDF for their sponsorship, partnership, and confidence in our mission, and to every supporter who stood behind us along the way. Our independence is not a separation born of disagreement. It is the natural next step of something that was carefully nurtured.

Thank you, HDF, and thank you to the global HD community, for helping us get here.

Why Independence Matters

HDBuzz has one core purpose: to explain HD research and clinical trial news clearly, accurately, and without spin.

As the HD research landscape has grown more complex, with late-stage clinical trials, regulatory uncertainty, and increasing commercial involvement, independence and unbiased reporting has become more important than ever. Families need a trusted source that can explain both good news and bad news, without conflicts of interest and without pressure to soften uncomfortable truths.

HDBuzz has never accepted funding from pharmaceutical companies, and that will not change. Independence ensures that this commitment is structurally protected, not just aspirational.

It also allows us to set our own priorities, respond quickly when news breaks, and continue expanding the ways we serve the community; from in-depth trial explainers to mentorship programs for early-career researchers learning how to communicate science responsibly.

What Changes and What Doesn’t

From a reader’s perspective, very little will change.

All HDBuzz articles will remain:

• Free to read
• Free to share
• Free of ads
• Written and reviewed by scientists
• Available in 11 languages

Our publication schedule of ~2 articles a week, editorial standards, and disclosure policies remain the same.

Behind the scenes, however, independence means HDBuzz now directly carries costs that were previously handled through fiscal sponsorship. These include accounting, compliance, insurance, governance, and the administrative infrastructure required to operate as a standalone nonprofit. None of these things are flashy. All of them are essential.

Why We’re Asking for Support Now

HDBuzz exists because the HD community believes clear, unbiased science communication matters. As an independent nonprofit, we now rely more directly on that community to sustain the work. Reader donations support:

• Website maintenance and security
• Professional translation into 11 languages
• Conference coverage and real-time reporting
• Live presentations to directly deliver research updates to the HD community
• Time for writers and editors to read, analyze, and explain complex research
• Mentorship programs for young HD researchers learning science communication
• Social media outreach to reach families where they are

There is no obligation and no minimum. Whether it’s a one-time donation or a monthly contribution, support at any level helps carry this work forward.

Looking Ahead

HDBuzz entered independence at a pivotal moment for Huntington’s disease research. As 2025 showed, scientific progress and regulatory progress do not always move at the same pace. Promising data can coexist with disappointment, uncertainty, and frustration. In moments like these, clear explanation matters more than ever.

Our commitment is unchanged: to serve the HD community with accuracy, context, and respect. We will continue to celebrate progress honestly, explain setbacks clearly, and never lose sight of the people living with the consequences of these developments.

HDBuzz began as an experiment in trust: that families wanted real science, explained plainly, without hype or fear. That trust has carried us to this moment. As we step forward as an independent organization, we do so with gratitude, responsibility, and optimism, and with deep thanks to everyone who has supported HDBuzz along the way.

If you value what HDBuzz provides, please consider supporting our next chapter. Together, we can ensure that independent, unbiased HD research news remains available to the entire community.