Everything here is here for a reason.

Read it once so you know the vocabulary doctors use. Then close the tab.

Good second opinion on the basics. MDA covers 40 diseases so it's broad, but accurate.

This is the page I wish existed the day I was diagnosed.

Worth the drive. A general neurologist will miss things an FSHD-aware one won't.

Bookmark it. Check back every few months. Things are moving faster than most people realize.

The 'don't lift' advice is outdated. This is closer to what the evidence actually says.

Bring this to your PT if they're not familiar with FSHD. Not all PTs are.

The study I wish I'd had when everyone was telling me not to lift anything.

The fatigue-assessment rule alone is worth it — if you're wiped for the rest of the day, you went too hard. Start with an online class before committing to in-person.

This group convinced me more than any research paper. Real people, real results.

Mitch actually gets it. Watch these before you take generic PT advice.

Not conclusive but worth understanding. Creatine is one of the few things with any real research behind it for our situation.

Real trials, but old ones, and not specific to FSHD. Reasonable evidence CoQ10 isn't harmful and might help — not enough to call it proven for FSHD specifically.

Most people with FSHD I've talked to are low on magnesium and don't know it.

We need more protein than a healthy person to maintain what we have. This explains why.

Real people trying real things and reporting back honestly. More useful than most studies.

Quieter than the other groups but sometimes that's what you need.

Nobody told me I'd grieve my old self over and over. This names it.

Hit or miss but when it hits, it really hits. Search FSHD specifically.

This isn't a health resource. It's what helped me figure out who I am outside of what I can't do.

The most promising thing in the pipeline right now. Worth understanding even if you're not in the trial.

Best single place to stay current on what's actually being studied.

Took me years to actually understand this. 20 minutes here will save you that.

I was on this one — search my name if you want to start there. But the whole catalog is worth your time.

If someone you love has FSHD, start here. It covers both of you.

MDA has more caregiver infrastructure than most. Worth knowing it exists.

My wife is my number one champion. This is the kind of thing that helps make that possible.