Cory Burell
2.5K posts
Cory Burell
@No_Quarter_Dad
Father, Husband, Pirate, Jedi Estimator, and ALS patient
Wake Forest, NC Katılım Ocak 2010
370 Takip Edilen278 Takipçiler
Cory Burell retweetledi
Mike Houston from JMU, has agreed to be the new head football coach at ECU.
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Cory Burell retweetledi
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...
Orlando, FL 🇺🇸 English
Cory Burell retweetledi
@alsadvocacy Spoiler alert Barb as the ALS Guidance document is still waiting approval.
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@pirateradio1250 @TylerFeldmanTV @TbeLegendary88 best question would be who is he gonna use for his realtor?
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WATCH: @TylerFeldmanTV asked #ECUFootball HC Scottie Montgomery about the leadership growth this season of WR Trevon Brown @TbeLegendary88. Join @pirateradio1250 for #ECU vs #Tulane game day coverage this Saturday starting at Noon!
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people commonly mistake the definition of insanity with advocacy .
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Cory Burell retweetledi
@HollyCooper333 @kylemace22 @Runwillyrun2 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.
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@CoreyPolen I just talked 2 the FDA about scheduling a meeting with about 10 of us ALS patients dr. Gottlieb and hopefully dr. Marks at the FDA. I am going to send them an email outlining my request. If they Grant my request, who all is in for going to Silver Springs Maryland for the meet?
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Ppl w ALS try stuff. You would, too. Sometimes it's simple stuff, sometimes not-so-simple If this is a news flash to a clinician or investigator, then you're not paying attention.
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Cory Burell retweetledi
.@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.
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Cory Burell retweetledi
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
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Cory Burell retweetledi
When DraftKings knows ur sweating the SGP Bigboy and stops updating stats...
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Truck on 540 has Bama and Yankees decals on the back window and I know they’re a terrrible person.
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@CraigReagan2 @nicolecimbura @alsadvocacy @marksberardi @paulsrowe @NormanMacIsaac @mandolin1001 Do no harm not "try anything"
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@nicolecimbura @alsadvocacy @marksberardi @paulsrowe @NormanMacIsaac @No_Quarter_Dad @mandolin1001 I don't have the final answer yet, I'm still here. However the first doctor said he wasn't willing to entertain any of them so I kindly ask him to leave and get me someone else and he did but the other person is not here yet.
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@alsadvocacy @No_Quarter_Dad @nicolecimbura @marksberardi @paulsrowe @mandolin1001 @NormanMacIsaac can I get input from y'all on this? It seems extraordinary!! Please ask others that may know as well. If original article doesn't show up here please find it on my feed.
Craig Reagan@CraigReagan2
Wa whaaat? The researchers then used their model to test two drugs that are now in clinical trials to treat ALS—rapamycin and bosutinib. They found that giving both of the drugs together restored most of the muscle strength that had been lost in the ALS motor units.
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But what’s compassionate use if not EAP? R they saying they did some individual EAPs but no more?
Cory Burell@No_Quarter_Dad
Cytokinetics saying no expanded access but have granted some compassionate use with reldesemtiv.
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