InnerVara Nexus · For families

Tell Us Where You're Stuck

We've been where you are. Answer what you can — every field is optional except your email — and we'll point you toward the people who can actually help.

A real person reads every message. Expect a reply Within One Week. This isn't an emergency service and we can't give medical advice — but we can help you find who can.

Where to go in the meantime

These are the same places we'd point you to first, and none of them are waiting on us.

A specialized ALS or neuromuscular center

Multidisciplinary centers are the single highest-value call to make. Ask your neurologist for a referral, or search for the nearest one directly.

A licensed genetic counselor

If you're holding a report you don't understand, this is the person qualified to read it — not us, and not the internet.

Your existing care team

Keep them in the loop on every decision. Nothing we'd tell you replaces them.

When we reopen intake, this page goes back to a form. If you'd rather wait and write to us then, nothing is lost.

It's in. We've got it.

Check your inbox for a confirmation — it should land in the next few minutes. If it doesn't, look in spam before assuming it failed.

A person will read what you wrote and write back within two weeks. If something changes before then, just reply to that confirmation email.

No fear — just faith.

First name — optional

Email — required

Where are you? — state, province, or country

This matters more than anything else here. The right specialist center is usually a driving-distance question.

Myself My spouse or partner My parent My child Another family member A friend, or someone I care for

Where you are in this

Symptoms, but no diagnosis yetStill trying to find out what’s going on Recently diagnosedWithin the last few months Diagnosed a while ago Genetic testing found a specific variant Genetic testing came back uncertainA “variant of uncertain significance,” or VUS Genetic testing found nothing No genetic testing yet Family history, but I’m not affectedThinking about testing

Yes Trying to get in No Not sure what counts

If you have a genetic report

Read this before you fill anything in. We don't interpret genetic results — that's the job of a licensed lab and a genetic counselor, and on rare variants it's a call that gets made wrong too often for anyone else to be making it. What we do is help you find the people who can interpret it, and figure out what's missing from what you've already got. So copy only what the lab itself wrote. Don't send us records, and please don't include anyone's full name or date of birth.

Which gene did the lab name? — optional

What did the lab call it?

Who did the testing? — optional

A lab name or a clinic name is enough. It helps us know what kind of report you're holding.

What would help most

Genetic testing and counselingGetting tested, or getting a result explained by someone qualified Specialized careFinding a real ALS or neuromuscular center, or a second opinion Clinical trials and researchWhat’s out there, and whether you might qualify Support and communityOther families, caregiver support, someone who gets it Practical and financial helpInsurance, equipment, caregiving, assistance programs Something else

In a few sentences — what's the one thing you most need right now?

Write it however it comes out. We'd rather have the real question than a tidy one.

0 / 1200

What have you already tried? — optional

Saves us from sending you back to a door you've already knocked on.

What happens to what you write here

It goes to one person at InnerVara Nexus. Nobody else reads it.
We don't sell it, share it, or hand it to a researcher, a company, or anyone else without asking you first.
Ask us to delete it at any time and we will.
We are not doctors and this is not medical advice, a diagnosis, or a second opinion. Nothing here creates a doctor–patient relationship. Keep your own care team in the loop on decisions.
Free, always. There's nothing to buy here.

I've read this and I'd like someone to get back to me. — required It's alright to check in on us later.Occasional — never automated marketing.

That didn't send. Your answers are still here — try again, or email us directly at families@innervaranexus.org.

If you're in immediate danger, call 911. If you're struggling and need to talk to someone tonight, call or text 988 in the US — they're there around the clock.