Kip Heinzmann

Father, Writer, Living w/ALS since June 2017

[Kip Heinzmann @Kipper]

Thank you Ari.

[Ari Melber @AriMelber]

Brian Wallach is battling ALS and advocating for fellow patients -- working with his family, medical experts & Obama admin veterans on this new cause.

You can follow him at @bsw5020 and read this (hard and also uplifting) story here:

https://t.co/MS4Ph6c4t9

[Kip Heinzmann @Kipper]

Course correction, thank you.

[The ALS Association @alsassociation]

A note to our ALS community: We fully intend to support both new bills that affect people with ALS. We hear the concerns from some of you and want to clarify our position. 1/4

[Kip Heinzmann @Kipper]

Thank you NIH, and @iamalsorg

[Brian Wallach @bsw5020]

Yesterday NIH announced $25M in new funding to combat ALS. This brings the funding increase in the last 18 months to $55M. Never forget that patient advocacy did this. That you did this. We have a long way to go, but never doubt that your voice is changing this fight.

[Kip Heinzmann @Kipper]

I don't know all the reasons why wouldn't support this… but the take away is you are not.

[The ALS Association @alsassociation]

#ACTforALS is well-intentioned but may delay getting treatments to everyone with #ALS, in favor of a few. We will continue working with stakeholders on behalf of the entirety of #OurALSCommunity to address these issues and improve the bill. Read more: https://t.co/tijAvC59qT

[Kip Heinzmann @Kipper]

@pjgreen Tripped in the garage and put my arm through a glass window… 15 stitches The car door knock me over and I smacked the back of my head on the driveway… much blood. Most recently rolled out of my chair because I was stuck… used Siri to call for help.
#ALSAwarenessMonth

[Kip Heinzmann @Kipper]

I see a lot of talk about asking POTUS for an EO. Are we working on a parallel path should there be a new administration elected in November?
#ALSAwarenessMonth
@iamalsorg

[Kip Heinzmann @Kipper]

@AmmarAlChalabi @ALSMNDAlliance My first neurologist concluded definite LMN issues, but Upper Motor Neuron presentation was not “typical” for ALS in his opinion. My specialist, Dr. Jonathan Glass, disagreed…DX conclusive, and added “you can either check the box or not. We can check the box, so you got it.”

[Kip Heinzmann @Kipper]

The Space Force flag ceremony reminded me of the flag from the show #Community.
@SethAbramson

https://t.co/UjwukOEJEr

[Kip Heinzmann @Kipper]

@bsw5020 Relentless

[Kip Heinzmann @Kipper]

@bsw5020 Thank you Brian.

I'm not mad at the rapid handling for COVID.… over 1M cases and 70K deaths justify it.

But 5000 new cases and 5000 deaths each year… and 100% fatal, do as well. We just want the same fast lanes for ALS.

#ALSAwarenessMonth

[Kip Heinzmann @Kipper]

@thetyfrankel @radicavaqueen @alsadvocacy Neurologist was not sure. Definitely LMN issues but thought Upper was iffy. He wanted a specialist yo to look at it, thought it was something other than ALS. The EMG technician told me at the time of the test they were concerned about ALS… so I expected it. Specialist confirmed.

[Kip Heinzmann @Kipper]

@radicavaqueen @alsadvocacy About 9 months. Sept ‘16 playing tennis and couldn't jump at the net. Beginning of foot drop. Sports therapist tried epidural. Recommended me too neurologist. Also went down myopathy path with rheumatologist but came back negative. EMG in April. Diagnosis at Emory June ‘17

[Kip Heinzmann @Kipper]

Well said. Thank you

[Erin Glass @eglass123]

.@FLOTUS Many with #ALS tragically did not survive to see 2020 due to a decade long FDA approval process preventing access to #NurOwn treatment proven safe and with UNPRECEDENTED results in multiple patients. @realdonaldtrump #axeALS

[Kip Heinzmann @Kipper]

Asking POTUS for an EO on #Nurown is a wasted effort… that would actually *save* people. Like the governors, we're on our own. The “injecting disinfectant” suggestions make that painfully clear, as if it wasn't before.

[Kip Heinzmann @Kipper]

@kehearn Thank you for this Katie. Just over two years and nine months ago I was diagnosed with ALS, and my life similarly changed. I try to Keep It Positive every day, but it's more difficult now worrying about others and being in quarantine. Good vibes to you!

[Kip Heinzmann @Kipper]

@elsiejo22955940 I remember I was playing tennis. I was at the net and went to jump… and couldn't. Very weird feeling, that was the beginning of foot drop.

[Kip Heinzmann @Kipper]

@bsw5020 My son is eight, and is in a treatment center for anxiety now because of me… he told his therapist he didn't like school because of all the walking on campus, His legs hurt. When asked, he was worried because daddy's legs hurt, and he might be getting sick like daddy. Confusion

[American Heart Association @American_Heart]

1 in 4 high school students are vaping, and the number of teens who vape more than doubled in 2 years. The vaping industry attracts kids with appealing candy, fruit, mint and menthol flavors. Big Vape must #QuitLying. More info at https://t.co/a7xuUodjRj.

[Kip Heinzmann @Kipper]

@twittersupport. Serious question… What is the user benefit to the auto update on my timeline? I am reading a tweet and suddenly it jumps and I’m presented a tweet I just previously read. There is got to be some benefit for me, right? Is it so I don’t have to auto-refresh? Dumb

[Kip Heinzmann @Kipper]

@coachbrian6262 Hang in there, you’re not alone. I try to focus on others, ask questions, reach out. Others can’t help you in your funk if they don’t know. Be vulnerable, be real. One tactic that works well Is when I think of somebody I send them a message. And dream…https://t.co/mEPWEgRbW0