Now available. Read our 2025 Impact Report
Now available. Read our 2025 Impact Report
In honor of World FSHD Day this month, we are spotlighting our community member, Bob Humphreys, who shares with us how BetterLife has helped him on his journey.
Note: Testimonials provided by study participants are personal experiences and do not necessarily represent the views of the trial sponsor. They are not a substitute for medical advice, and the results of the study may vary based on individual circumstances. Always consult with your healthcare provider before making any medical decisions.
My family and I have been involved with the FSHD Society since its inception. I can remember as a teenager providing tissue samples [for research]. Fun Times.
In the last six or seven years I became more involved with fundraising for Walk and Rolls and now serve on the board. Back during the Covid pandemic, as part of a Boy Scout Merit Badge project for my son’s Troop, I added a fundraising component based on miles walked or biked. Our Troop’s families were amazing and still are strong supporters during our annual Walk and Roll. Oh, and the Purrfect Fundraiser is Sir Arthur; he leads the Paws for the Cause campaign.
Managing and keeping organized is no easy task with FSHD. Medical complexity, mental fatigue, and physical fatigue create challenges to disease and life management. I was excited to get some help thanks to BetterLife [by using the Health Diary for tracking]. Honestly, I look forward to updates to the BetterLife platform to help all of us as we move forward to cures and management of our medical needs. Besides, my Neurologist can tell that I have become a better advocate for myself thanks to the FSHD Society and BetterLife. He encourages me to keep at it.
[I use BetterLife] to stay abreast of clinical trials and track my muscle weakness, pain and fatigue using the Health Diary. I know there is a fair amount of variability, but when I look at my data from ‘all time’, ‘30 days’ and the ‘last two weeks’, it really helps me see how I feel physically and mentally day-to-day. [My trends] are something I discuss with my PT and Neurologist. These are great snapshots and it is nice to know that some days are better than others and that is okay!
I also like to see the new information being shared on the disease and the community polls/insights shared through BetterLife. It is a connection that helps me realize that help is coming, I am not alone, and that to be a strong advocate for myself and others, I must stay informed. BetterLife really helps [people] live a “Better Life!”
It provides actionable data and perspective that takes the conversation from “I think I feel” to “this is what I have recorded and tracked over time”. When I try new or different exercises, we [my physical therapist and I] have something to use as data on whether exercises and movements are helping or not. It also reminds me that I need to schedule that next appointment again since it has been a little too long…
“What would you tell another person with FSHD who is considering joining BetterLife?”
Knowledge is power and this is a great way to be informed, create useful routines in your life, and to become a better advocate for yourself and our community. We all need to be engaged, because time is not our friend- time is Muscle!
Never underestimate yourself or others. When you invite people to join your cause you will find more people are happy to help than not. In fact, they are often grateful. If you are ever in Northern Virginia, join me and my family on Electric Avenue.
BetterLife FSHD is a health and research platform created to help people living with Facioscapulohumeral Muscular Dystrophy (FSHD). BetterLife gives you tools to track your symptoms and resources to better understand and manage your FSHD. The information you put in BetterLife is used for FSHD research.
To Join:
English English 
العربية
Español de México
Français du Canada
简体中文
