Joined November 2015
Photos and videos
Suedee retweeted
21 Sep 2023
If I have learned anything over the last six years it is that I will fall short a lot but that will never keep me from getting up and trying again. Good night moon.
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Suedee retweeted
This was the front page of UNC-Chapel Hill's Daily Tar Heel. No student, no parent, and no American should have to send texts like these to their loved ones as they hide from a shooter. I'll continue to do all I can to reduce gun violence and call on Congress to do the same.
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Suedee retweeted
This is one of the most profound videos I’ve filmed since the rise of Trump. I asked him why he was there. Tears rolled down his cheeks. His father who was a WWII veteran (like my dad) told him “We gotta stop this guy”. He was a squadron commander and he lost 110 men and he never got a scratch. And he lived his whole life trying to be worthy of their sacrifice. And he asked me to do the same. So this is a very small thing to do. But why everyone in the country isn’t doing this and trying to understand what this man is doing to our country. I don’t get it. But everybody needs to do something to stop this guy” Please listen to every single word and share. #TrumpArraignment #Truth
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Suedee retweeted
Today, the Yankees honored native New Yorker & beloved baseball statistical analyst Sarah Langs, who was diagnosed with ALS in 2022. Thank you to @SlangsOnSports & @HerALSStory for joining us today! “Langs Stars” can be purchased by visiting StarsForSarah.org with 100% of the profits going to @ProjectALSorg 💙
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Suedee retweeted
On Canada Day | A Punjabi Celtic Fusion While Paying Respect To The Indigenous Peoples: On Canada Day, we take a moment to acknowledge that we are on Indigenous lands, thinking about the profoundness of this fact. Furthermore, we reflect upon Canada's past and recognize the vital importance of the future steps towards Truth and Reconciliation.
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Suedee retweeted
There was a little coffee shop where two people arrived and approached the counter. “Five coffees ☕️ please. Two for us and three pending.” They paid, they took their two coffees and left. I asked the waiter. "What’s this about pending coffees?" “Wait and you'll see." Some more people came in. Two girls asked for a coffee each, they paid and left. The following order was for seven coffees and it was made by three women - Three for them and four pending coffees. I was left wondering...what is the meaning of the pending coffees, they leave. Then, a man dressed in worn clothes, who looks like he might be homeless, arrives at the counter and asks sincerely... “Do you have a coffee pending?” “Yes we do, sir.” They serve him a coffee.... I got my answer. People pay in advance for a coffee that will be served to whoever can't afford a hot drink. This tradition started in Naples. Amazingly, it has spread throughout the world’s cities and towns. It’s also possible to order not only “pending coffees” but also a sandwich or a full low cost meal. Wouldn’t it be great if we could all start doing this in the cities and towns where we live? Small kindnesses like this can impact so many lives, in ways we could never imagine. Maybe we should all try it. 😊❤️🌹
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Suedee retweeted
#ALS has been a death sentence since it was first identified in 1869. Unfortunately, we're diagnosed and very soon after our bodies deteriorate and we die. It's hard for patients to mount a strong advocacy voice to fight for the same FDA urgency & flexibility as other terminal diseases. The FDA has made empty promises to generations of ALS patients who now fill cemeteries. Because they aren't elected officials, there is no accountability. If only the currently healthy public would realize that ALS is not rare & is rapidly becoming more common, they would help fight before ALS possibly enters their life. It's a horrific disease. #ApproveNurown @DrCaliff_FDA @FDACBER @RepGuthrie @RepLarryBucshon @RepAnnaEshoo  @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun  @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepPaulTonko @RepChuck @Congressman_JVD @RepDavids @kevinmullin @RepChrisPappas @SenRickScott @NeeraTanden46 @SenMarkey
When does the FDA intend to take Nurown under consideration? For a disease with a 100% fatality rate, I cannot for the life of me understand why the FDA is so reluctant to approve drugs for ALS. Even if they "only" work for a subset of patients, it's better than zero!
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Suedee retweeted
What happened in Tennessee is the latest example of a broader erosion of civility and democratic norms. Silencing those who disagree with us is a sign of weakness, not strength, and it won’t lead to progress.
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Suedee retweeted
3 Apr 2023
To all ALS clinics and biopharma: We are less than one month away from the deadline to submit an EAP grant application. You have an opportunity that no one else has: To have NINDS fund your EAP program. Please do not waste it or it will go away. grants.nih.gov/grants/guide/…

24 Mar 2023
To all ALS clinics and biopharma: You have a little over one month to apply to NINDS for expanded access program grant. Please do not submit an application to treat 50 patients. This is a one-year grant to treat as many patients as possible, i.e., 100 . grants.nih.gov/grants/guide/…
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Suedee retweeted
I have posted this before but .. 26 years ago, a gunman entered Dunblane Primary School in Scotland, killing 16 kids and a teacher. The UK govt responded by enacting tight gun control legislation. In the 9400 days since, there have been a total of O school shootings in the UK.
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Suedee retweeted
16 Mar 2023
I have some exciting personal news to share. In tomorrow's print edition of @people magazine, there will be a three-page article on me and Sandra, our family, our fight, and No Ordinary Campaign, @noc_film. Now that is a post that I never thought I would write.
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17 Mar 2023
RT @kelsieswrites: 5 yrs ago today I had a moderate stroke from a vertebral artery tear caused by a chiropractic neck adjustment. After 6 d…
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Suedee retweeted
14 Mar 2023
This is an amazing and beautiful review by @ebertchicago of No Ordinary Campaign, @noc_film. The review of NOC ends with a call to action... rogerebert.com/festivals/sxs…
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Suedee retweeted
Around 3/4 opioid-related deaths in Canada are men. What we say can influence whether people reach out for help. Help or get help now:
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Suedee retweeted
This is the same procedure for injecting #Nurown for anyone who doesn't know. Tofersen and Nurown are both delivered by intrathecal injection which usually takes no more than 5 minutes. Intrathecal injection means into the spinal fluid BELOW the spinal cord.
After 16 months of pushing and fighting I got my first Tofersen injection. I had to fly across the country to Montreal to get it but much thanks to @genge_angela and the staff at the @TheNeuro_MNI for making it happen. Hopefully the door is open now for other #SOD1 ALS families
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Suedee retweeted
The strongest ALS Warrior needs a weapon in battle. #NurOwnWorks
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Suedee retweeted
PLEASE use as much as u can on social media! #NurOwn #Tofersen #end als #dyingwaiting 💙🌹🌙🙏🙏🙏 #Als warrior's
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Suedee retweeted
Sharing my journey. 🙏🏼
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Suedee retweeted
27 Feb 2023
Six years ago I was told to prepare to die. This is the improbable, inspiring, love-filled, hope-filled, true story about the extraordinary campaign that happened next. This is where you come in: please share this trailer with everyone so that we can bring hope to everyone.
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