Welcome to our latest blog post where we dive into an exciting initiative for the Huntington’s disease (HD) community—Power HD. Recently, I had the pleasure of sitting down with Arik Johnson, Interim CEO and Chief Mission Officer at the Huntington’s Disease Society of America (HDSA), to discuss this groundbreaking project. Together with our partners at HD Reach and others, we are uniting to create a powerful platform that will allow the HD community to have their voices heard in ways that truly matter.
What is Power HD?
Power HD is more than just a platform; it's a Federated Data Platform designed to capture the lived experiences of those impacted by Huntington’s disease. Whether you are living with HD, at risk, a caregiver, or have lost a loved one to HD, your input is invaluable. The goal of Power HD is to gather this input through empirically validated surveys to inform research and influence the development of treatments and therapies.
Why is Power HD Important?
In the HD community, our experiences are unique and multifaceted. Traditional disease models often fail to capture the full scope of what it means to live with HD. That’s why Power HD is so important—it’s designed to reflect the real, lived experiences of our community. From understanding the caregiver burden to the intricacies of living with Juvenile HD (JHD), Power HD aims to provide researchers with the data they need to develop more targeted and effective treatments.
As Arik and I discussed, it’s essential that our community is not compared to others, such as those living with dementia, which is often done in research. We are not dementia—we are HD, and our voices need to be heard in the context of HD.
How Can You Participate?
Participating in Power HD is simple and flexible. The surveys can be completed at your convenience—whether that’s in the comfort of your home, during a quiet moment, or whenever you have time to reflect on your experiences. The platform is designed to be accessible, so you can participate whether you have been involved in clinical trials before or not. If you’re new to clinical research, Power HD can be a great first step toward getting involved in the HD community’s broader efforts to push forward research.
Why Now?
We are at a pivotal moment in HD research. With advancements in gene therapy, disease-modifying therapies, and other innovative treatments, it is more critical than ever for our community to be research-ready or maybe regulatory-ready may be a more appropriate term. By participating in Power HD, you are contributing to the data that will help shape the future of HD treatment. Your voice can influence what gets prioritized in research and what gets approved by regulatory bodies like the FDA.
Thank you for your ongoing support and for being part of this vital conversation. Together, we can fight to be the last generation that has to live with HD like our past generations have been forced to do. Stay tuned for more updates and opportunities to get involved with Power HD!
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