An Open Letter to Our Community

Originally shared with the BDSE community on February 15, 2026

*Editor’s note: Links included with the original communication have been omitted from this public version.

Dear Members,

We are writing to you with a heavy heart—but with transparency and deep respect for the community that has trusted us for nearly a decade.

Over the past year, we have been navigating an unprecedented and deeply challenging situation. Many of you may recall two prior public notices we shared. At the time, those statements were intentionally broad, not out of avoidance or secrecy, but for safety.

Individuals involved in this situation were actively harassing members of our administrative team, engaging in defamation, and monitoring our communications across online spaces.

From the outset, this placed an extraordinary and ultimately unsustainable burden on our team. Volunteer administrators were forced to divert countless hours away from research, education, moderation, and direct member support to manage harassment, documentation, and ongoing risk mitigation.

These demands were further compounded by serious and credible concerns surrounding the unauthorized use, reproduction, plagiarism, and misappropriation of community-generated research, original intellectual contributions, and proprietary educational materials. Investigating, addressing, and properly documenting these violations required substantial time, focus, and resources, placing an additional strain on our organization. The cumulative impact has been significant - drawing time, attention, and emotional energy away from the very work this community exists to provide.

What we did not yet understand was the depth of what was unfolding. As we previously shared, the scope was unlike anything we could have anticipated. Issues that tangentially involve our group have been brought into ongoing legal proceedings. We hope that the court filings we are linking provide the broader extent of what we believe occurred.

Because the concerning activities continued and intensified, we have been unable to operate the group as we previously did. Despite early efforts to remove individuals engaging in harmful conduct, the behavior persists, often through multiple profiles or via third parties. Our content, written summaries, media files, and deeply personal member stories were and continue to be taken from within the group and used elsewhere without consent. This creates an environment in which we can no longer reliably protect member privacy, safety, or the integrity of this space.

In parallel, a narrative about our team that we believe is defamatory was launched over a year ago. Until now, we have chosen silence, believing that professionalism and restraint were the appropriate response. Unfortunately, that silence allowed misinformation to spread unchecked, presenting a version of events that does not reflect who we are or how this group operates.

We want our members to understand something clearly: before this group existed, very little information was available online to support those experiencing adverse effects from botulinum toxin. We are proud to have been instrumental in building the awareness and educational foundation that so many rely on today. We remain the longest-running and most established Botox and Dysport Side Effects Support Group.

This community has existed for nearly ten years and has been sustained entirely by the goodwill of unpaid, full-time volunteers. Our administrative team sacrificed careers, personal time, and emotional energy to research, moderate, and support others, often behind the scenes and without recognition. We have never monetized our work or placed information behind a paywall.

From its inception, this community has prioritized the development and dissemination of ethical, evidence-based, cogently analyzed, and properly attributed research and educational content. We recognize the gravity of presenting medical and scientific information, as it concerns people’s health and lives. We remain committed to accuracy, transparency, and responsible citation practices. The narrative circulating about our intentions and character stands in direct opposition to our actions and values. We believe this narrative was created and spread by individuals seeking to monetize our content without our permission.

We also want to sincerely apologize to anyone who may have been affected by our prior actions. Early on, we were forced to make decisions quickly, without full visibility into who was involved or how extensive their efforts were. Our intent was never to deny support to anyone suffering, and we deeply regret any unintended consequences.

Moderating a community of this size requires consistency, diligence, and firm standards. Our rules exist to protect members and keep this space functional. When those standards are repeatedly violated, removal is sometimes necessary. This is not personal and is consistent with how many online communities operate. As a community hosted on Meta, we are also required to operate within the platform’s policies and limitations. All administrative and moderation decisions must align accordingly, or the group could be shut down. Support remains available through our website, social media platforms, and the public page maintained by our administrator, Gretch.

We are also selective about the posts we allow. Content that may be misconstrued, contains recommendations shown to worsen symptoms for a significant portion of our members, or is overly triggering for our most vulnerable members may be declined. This is never personal. It is based on years of experience and is done to preserve a safe and supportive environment.

Unfortunately, our measured and professional response to the ongoing efforts of a few has itself been weaponized. A growing group, including some individuals who were removed years ago for unrelated rule violations, has coalesced around a false narrative of wrongdoing. Stories about removals, interactions, or even membership have been exaggerated or fabricated to fuel a situation we did not create, harming our reputation.

We have never sought to gate keep information, suppress collaboration, or prevent others from forming their own groups. That claim is simply untrue. What occurred over the past year crossed ethical boundaries and created risks we could not have reasonably anticipated.

Given the ongoing strain this situation has placed on our team, including the substantial diversion of time, resources, and focus away from critical scientific, advocacy, and community support efforts, we carefully considered whether it was feasible to remain open while navigating these challenges. Closing the group has been discussed. However, at this time, we remain committed to doing our best to stay open and to continue supporting this community while we work to address these issues responsibly.

We are profoundly grateful to every person who has contributed, participated, and supported one another here over the years. It has been an honor to serve this community. We sincerely hope that one day this chapter can be put behind us.

Thank you for your understanding, your trust, and the role you have played in making this community what it was and what we hope it will be again.

Respectfully,

BDSE Admin Team