John Tauer #45….beast!

Been saying this! Infrastructure is not where it needs to supply HD community ‘s future demand.

What if building this helped him release stress of the job, and that helped him be a better coach?

But what’s the worst case if they break NDA…. they get sued by uniQure? That wouldn’t happen. They lose drug supply…that isn’t the case here.

I’m a bit surprised the participants/care partners haven’t been more publicly vocal sharing the impact. I believe they’ve been told to stay off social media with their experiences, but it’s not like they’ll go to jail if they do.

“Gold standard” sadly continues to feel like 10k gold. HD stakeholders definitely have work to do to improve enroll and measurements like TFC/cUHDRS. Tough day for many, but I’m hopefully AMT will work out and regulators/Mds/payers will all agree too.

Should be updated now

help4hd.org/events-1/virtual… register today for non-Facebook live. Did you ever make that donation, Maarten?

I believe she started a company with HD compound

Ding ding ding.

Might have caught some slack for jumping the gun a bit last year.

Strongly agree.

I guess reading this with everything saying “or more” it allows for a lot of site selection confusion and possibly messy data. Right? Skyhawks criteria is vague for sure.

If you have a TFC of 10, you definitely have HD.

No offense to Dr Sung, as he’s a great MD, but if he doesn’t understand insurance, he’s going to have a heck of a time getting his hospital system to administer AMT. Still lots of time to prepare but if he doesn’t get it, how do you think the other 65 COEs get it?!? #SuperCenter

Make it happen! I’ll talk to Help4HD. paypal.com/donate/?hosted_bu…

Make a donation! These are small orgs doing the best they can. Your money helps, boys!

To get scheduled. That realistically makes “3 years” more like 12-16 months. My opinion.

My only push back that I continue to say is it’s not really “3 years” the clock starts when they enroll in the study which could be in 2 months. Approval may not be for 10 months. Availability 12-14 months. You the. Need an MD prescription, insurance approval and then procedure..

Or maybe took an internal role