Went to an infusion center this morning. Can you imagine trial enrollment if sites were a hair nicer like this?

Through my "premium" Blue Cross NC private insurance I don't qualify for private duty nursing because we've managed thus far. My wife stopped me from dying at 4:30am this morning and I mean barely. That shouldn't be on her. #bcbs #endALS

Last CDC Registry kept said 15,927 ppl in US w ALS. How about offering a $500 grant to each. That's < $8 mil. Use the $10 mil registry budget for that and you'll get a better count of people w ALS than we are getting from the registry. Oops... will you run out of $?

We're tired of settling. Meh registry at a a high price. Meh therapies at high prices. Meh healthcare at high prices. Too much meh while they kid us that you get what you pay for & all is wonderful. We're tired of settling for meh & paying way too much for it at that.

This is why I fight. #EndALS #lifelessons

@SGottliebFDA Donald J. Trump Why not conditionally approved the most promising ALS drugs in the pipeline? What we have available to us currently is less than mediocre. We continue to have no promising treatments! Please help change that!!!

@SandyMo77787733 Nicole Cimbura @paulsrowe @marksberardi Cory Burell Madeline Kennedy Kristi Driggers Tom Ford Ken Kowalski ❎ C Lebovits I think this is what we need to push for. Any opinions? Please help draw attention to this matter by retweeting. Thanks!

Cytokinetics r &d call very interesting. Just crazy to hear about going back to the drawing board on dosing after involving 440 pals in phase 2.

Cytokinetics saying no expanded access but have granted some compassionate use with reldesemtiv.

Brought a little tear to my eye als.net/news/jeff-swic…

When DraftKings knows ur sweating the SGP Bigboy and stops updating stats...

Today marks 2 years since I was diagnosed with ALS. I’m still fighting every day and to celebrate this day and make it something positive, I am presenting my new fundraiser called #Shotguns4ALS! Please watch the video, visit the link below! fundraise.als.net/shotguns4als

.@SGottliebFDA There are ppl w ALS who are concerned that therapy developers won't try RTT w/o FDA Guidance to insure it won't be held against them. Any chance of a simple, strong statement frm you instead that it's a perfectly legal path that they may use if they like? Thx.

h Kyle Connors #fALS Runwillyrun Again under the RTT laws here in the US companies are prohibited from making a profit (just like with EA), but only recover their direct costs. Companies need a policy from the FDA on RTT as they need something to follow. Once that is complete we will have traction.

ALS Advocacy Spoiler alert Barb as the ALS Guidance document is still waiting approval.

people commonly mistake the definition of insanity with advocacy .

been awhile.Not kickin and not well but still alive.

9 on your side Sports has learned that Jon Gilbert will be announced as the new ECU AD... JMU's Mike Houston continues as leading candidate in football coaching search...

Mike Houston from JMU, has agreed to be the new head football coach at ECU.

marketwatch.com/story/als-pati…