Dec 10 2024 46 mins
You’ve seen the social media posts and heard the ads, now join us for a deep dive into BetterLife FSHD. This week, Tim is joined by Amy Bekier, BetterLife FSHD Focus Group Member, and Kayleigh Worek, BetterLife Program Manager. Together, they discuss:
––How BetterLife uses surveys to collect comprehensive data from platform users
––How survey data can match users with clinical trials/research opportunities AND provide researchers with information to conduct their research
––Current and upcoming features and benefits
––How Better Life provides resources and connections to help everyone live a Better Life while living with FSHD.
As Kayleigh said, “We’re really hoping [the platform] can be your one stop shop to live your best life with FSHD. We’re tackling a lot of needs and we want it to be able to help you back.”
***About BetterLife FSHD***
BetterLife FSHD is a health and research platform for people with FSHD. Our mission is to provide you with tools and resources to better understand and manage your FSHD, all while contributing to groundbreaking research.
BetterLife FSHD is owned and managed by the FSHD Society. Learn more and sign up today at www.BetterLifeFSHD.org.
***About FSHD Straight Talk***
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
Episodes highlighting members of the FSHD Community drop on the 2nd & 4th Tuesday of the month. Listen on Youtube, Facebook, Spotify, or wherever you get your podcasts.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: [email protected]
––How BetterLife uses surveys to collect comprehensive data from platform users
––How survey data can match users with clinical trials/research opportunities AND provide researchers with information to conduct their research
––Current and upcoming features and benefits
––How Better Life provides resources and connections to help everyone live a Better Life while living with FSHD.
As Kayleigh said, “We’re really hoping [the platform] can be your one stop shop to live your best life with FSHD. We’re tackling a lot of needs and we want it to be able to help you back.”
***About BetterLife FSHD***
BetterLife FSHD is a health and research platform for people with FSHD. Our mission is to provide you with tools and resources to better understand and manage your FSHD, all while contributing to groundbreaking research.
BetterLife FSHD is owned and managed by the FSHD Society. Learn more and sign up today at www.BetterLifeFSHD.org.
***About FSHD Straight Talk***
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
Episodes highlighting members of the FSHD Community drop on the 2nd & 4th Tuesday of the month. Listen on Youtube, Facebook, Spotify, or wherever you get your podcasts.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: [email protected]