Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
In case you missed it, the long-awaited and first-of-its-kind digital research and health platform, BetterLife FSHD, launched last fall. In our video below (scroll too the bottom of the page), Kayleigh Worek walks you through the basics and answers frequently asked questions.
BetterLife was designed in partnership with people living with FSHD to be your go-to platform for taking control of your health journey.
After receiving several big feature upgrades in January 2025, BetterLife now serves as a one-stop hub to track symptoms and progression, contribute your data to research anonymously, discover personalized articles relevant to your journey, investigate how your experience compares to that of others, and easily identify research opportunities that may be a good fit for you.
Joining BetterLife FSHD is easy. After providing consent on a web browser or mobile device and creating a login, BetterLife users are taken to an easy-to-navigate dashboard.
Participants enter information at their own pace by completing surveys, which unlock new features. Your progress is tracked by badges, and you can view how many other users have achieved the same badges and milestones.
BetterLife follows the highest industry standards for digital security, ensuring that users and their data are protected:
With hundreds of participants from more than 40 US states, BetterLife brings tangible benefits for people living with FSHD:
For many, BetterLife offers a sense of belonging. Mollie Garrett shares, “FSHD is a daunting disease to live with, especially when we feel alone on the journey. This website allows me access to reliable information and tools when I need them. I cannot stress how invaluable this is to me!”
Participants note that they enjoy the informative and useful content that is part of a comprehensive and well-catalogued resource library.
Users can also engage with community polls, a forum-style feature that enables curious community members to see how they compare to others with FSHD in real time and pose their own questions of interest.
For others, BetterLife provides hope. Kate Brown states, “After navigating my disease alone for so many years, I am thrilled to have a website designed to support me and my family…. I am sure it will become my go-to source for daily life.”
More than half of participants use the daily symptom tracking feature to monitor their pain, fatigue, and muscle weakness, and easily view their trends.
Additionally, families can benefit from linking profiles for affected family members and delegating access to trusted people (such as a spouse).
Finally, BetterLife uses survey answers to match participants with current research opportunities in FSHD.
BetterLife has also made behind-the-scenes impacts by recruiting participants for interviews and focus groups with major pharmaceutical companies.
Soon, BetterLife will unveil a specialized portal for researchers, helping to support research projects and the development of future therapies.
The BetterLife team continues to work hard to provide even more valuable features, which will be released this year to the FSHD community. We’re eager to hear your feedback as we work to make BetterLife the best it can be.
Thank you for joining us on this journey – there is so much more to come!
