Written by Dr. Sara Hernandez October 7, 2024 Edited by Dr. Rachel Harding
Since its founding in 2010, HDBuzz has existed with the funding of nonprofit organizations in the Huntington’s disease (HD) field. In our 14 years of service, we have never asked for donations directly from the HD community. However, recently, at a time when HDBuzz’s survival was at stake, we lost the support of one of our largest and longest-standing supporters. This seriously jeopardized HDBuzz’s existence. We want to prevent this from happening again. We’re asking for your help to keep HDBuzz alive and to continue reporting science in plain language to the global HD community.
To date, HDBuzz has received funding from a consortium of HD community organizations. Our founding partners are the Huntington’s Disease Society of England and Wales, the Huntington’s Disease Society of Canada, and the Huntington’s Disease Society of America. The Griffin Foundation, a nonprofit educational foundation, is the primary funding partner. Recently, we have received significant financial and administrative support from the Michael Berman Family Foundation and the Hereditary Disease Foundation (HDF). Currently it’s kept as a project within HDF until we get our footing.
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These organizations have funded and supported HDBuzz as a service to the entire HD community, but they have never received special access to its content, which is freely available to everyone. They have never had editorial control over our content and have never asked for it.
Importantly, HDBuzz never accepts funding or support from pharmaceutical companies. HDBuzz loves pharmaceutical companies. We hope that pharmaceutical companies will work together to treat HD. However, we strive to avoid receiving funding from organizations that specialize in particular treatments, as this can give the impression that our reporting is biased.
In 2024, HDBuzz operations were transferred from the UK to the US. This was not surprising given that HDBuzz’s leadership was no longer in the UK but in North America.
While this transition was occurring, we lost financial sponsorship, stewardship, and support from one of the largest and longest-standing donors within the HD nonprofit field. Relying solely on donations from other HD nonprofits has proven to be a finicky model with the potential to jeopardize HDBuzz’s existence.
“We hope our services will help families with HD make educated decisions about their lives, treatment, and care, especially as we move toward the development of disease-modifying drugs.” Masu. ”
We realized we needed to consider other models that were more sustainable and better reflected the value we brought to the HD community. This will ensure that HDBuzz stays with you for many years to come.
But our mission remains the same. It’s about reporting science in an unbiased and understandable way that helps the HD community better understand HD, research, and clinical trials. We want to offer our services to families with HD to help them make educated decisions about their lives, treatments, and care, especially as we move toward the development of disease-modifying drugs. I am.
To build a long-lasting, sustainable model, we’re now directly inviting our readers to consider contributing to HDBuzz’s mission. Given enough generosity, this would allow us to be completely independent from other organizations in the HD field.
If you value the service HDBuzz provides, please consider making a donation. We want HDBuzz to be sustainable so we can continue to report unbiased science to the HD community. Your support allows us to ensure the continuity of our services. Nothing is expected of you, but everything is appreciated and supports what we do at HDBuzz. Please try to do what you can.
We’re asking for your donation to keep HDBuzz alive and to continue reporting science in plain language to the global HD community.
HDBuzz is never behind a paywall. You can still access content on HDBuzz even if you don’t donate. We strongly believe that science should be accessible to everyone in all ways. We do our best to make complex science easy to understand, and we’ll always do it for free.
We will continue to operate under the Creative Commons Attribution License and make our content free for syndication to reach as many people as possible. We strongly encourage you to share our content with anyone you think could benefit from it.
Donations help maintain the website, update the website, translate articles into different languages, travel to conferences for live tweet surveys, and conferences for presentations and direct interaction with the HD community. used for travel. And during that time, writers and editors spend time reading, writing, developing content, putting together presentations, and presenting to the HD community.
Additionally, we want to expand our content, add more writers, increase the number of countries we serve, and more ways to directly engage with the HD community. We’re excited to continue and expand the work we’re already doing.
“If you value the service HDBuzz provides, please consider making a donation.”
We are deeply committed to the HD community and deeply immersed in it. We spent the early (and late!) hours of our lives working diligently in the lab, learning as much as we could about HD. I’m trying to figure it out. We are trying to find a cure for it. We are HD family, researchers, scientists, supporters, and friends.
We hope the content you find on HDBuzz informs, educates, comforts, and brings hope. Both when it’s dark and when it’s sunny. Our goal is to be a conduit for everyone to access the information that HD researchers have. We feel strongly that the work of scientists is not done until the people who need it most – HD families – get that information.
As HDBuzz contributors, we’re proud to report on the great HD science being conducted in labs around the world to move us toward an HD-free future. We are deeply grateful that the HD community trusts us to communicate the research, the truth behind the science, and what it means to HD families.
To contribute to HDBuzz’s mission, click the donate button below. Even a monthly donation of $20 goes a long way toward making HDBuzz sustainable and growing. Thank you for being our new partner in this effort.
