Living with CMS or caring for someone who is? We want to hear from you.
Folia is planning a new CMS research study. To help guide it, we are inviting people with CMS and their caregivers to a paid, one-hour interview.
Who can take part
These interviews are a first step. What people share will help make the study useful for those living with CMS. Fill out the form to be contacted.
To take part, you must:
- Live in the United States
- Be able to join a video call, like Zoom
- Be an adult, 18 or older, with CMS. Or be a caregiver for someone 12 or older with CMS
- Have CMS caused by a change in one of these genes: DOK7, MUSK, AGRN, or LRP4
Prefer to start by tracking?
Folia Health is a free app. It helps you keep track of your CMS day to day.
Use invite code “CMS-IN” when you sign up
Why tracking matters for CMS?
CMS is a neuromuscular condition that causes fatigable muscle weakness — difficulty chewing and swallowing, weakness in the limbs, drooping eyelids, and fatigue that builds with exertion. These symptoms fluctuate and can be hard to describe in a few minutes during a clinic visit.
Your daily experience is data. Over time it becomes evidence you can use to understand patterns, talk with your care team, and set goals. Tracking allows you to capture that evidence. Folia makes it easier than ever.
How it works
While static trackers and discussion guides exist (e.g., PDFs you can print), Folia is the first and only interactive tool that captures, visualizes, and lets patients (or caregivers) reflect on their daily CMS experience over time.
Capture your daily reality
through tracking
See your insights and validate what you feel
Keep a source of truth that grows with you
Make data-driven changes
about your care
What our users are saying…
So simple to use, very intuitive. Keeps track of what you want when you want it to. Extensive and at your fingertips.
- Matt G.
When I started using Folia, I was missing key baselines in my health history and wanted tools to better understand my [PNH]. Over time, the platform gave me clarity on my daily symptom patterns and how my treatments and supplements were impacting me. It helped me stay accountable to my routines, understand my energy levels, and provide targeted information to my doctor that directly informs decisions about my care. With clarity comes confidence.
- Kya
“I've been with Folia Health for almost 2 years now. Tracking every single thing that I need that's going on in my life medications, moods, situations etc. If you can think of it, you can track it.”
- Tyla R.
Start managing your CMS today
Use invite code “CMS-IN” when you sign up
Frequently Asked Questions
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Anything that affects how you feel or function: Things like fatigue, muscle weakness, swallowing or breathing changes, ptosis, and how exertion affects you.
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Instead of saying “it felt like I was worse last month,” you can show your symptom timeline with data that illustrates patterns and responses to treatment adjustments.
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Yes, your data belongs to you. You choose whether you want to share it anonymously with research efforts.
See more about privacy here.
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Yes! Folia allows you to create both a personal and caregiver profile so you can easily toggle between who you are tracking for!