Maurine Tombrello @motombrello

You never played for us, but you're still family. The game is going to miss you @JasonKelce ❤️ Congratulations on a legendary career!

There are days I want to pretend ALS doesn’t exist. Post caregiving is a trauma not many understand. Nadia refuses to turn a blind eye & faces ALS head on every day, and is an asset in the ALS world. Incredible is the word I would use to describe her ❤️

Dr. Nadia Sethi @nadia_sethi

7 months ago

I've been called a lot of things in my life before ALS, during ALS, after ALS. I'm pretty resilient. You can call me a former advocate- I'll admit that stung for about 5 seconds when someone first said it to me last year. Then I laughed and realized it didn't matter. 1/6

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Seth showed true bravery with his honesty of the good and bad of ALS. Despite his suffering he always checked on me and communicated how hard ALS was on his beloved wife too. @erika_poling you sure did him proud & I hope you know how loved you were by him and all of us too. ❤️

Seth Poling @SethPoling10

10 months ago

There is a beginning and end to every story; this is the end of my story, but this is not goodbye; it is a see you later. In the end, it's not the years in your life that count. It's the life in your years. Friends and family, THANK YOU. Please continue my fight to #EndALS.

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Happy heavenly birthday Scott. The girls and I made you a cake that tasted better than it looked and sang you a sweet song. I have a feeling you’re going to bring out some pretty amazing fireworks later tonight. We miss you every day. ❤️

Great read about our co-founders! Big thanks to ⁦@NPR⁩ for sharing this important and moving story with the world. #EndALS npr.org/2023/06/30/118…

Recently Pat was admitted to George Washington University Hospital. Aside from the many struggles that he faces daily, he is currently dealing with several other complications. Thank you to all the staff at the hospital who have been providing excellent care. There’s no quit in…

There is a beginning and end to every story; this is the end of my story, but this is not goodbye; it is a see you later. In the end, it's not the years in your life that count. It's the life in your years. Friends and family, THANK YOU. Please continue my fight to #EndALS.

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Sandra was the first person who made me feel okay for saying how excruciating caregiving for #ALS was out loud ❤️. Scott felt guilty when I expressed it, but I always reminded him I loved him and none of this was his fault. Communicating honestly was important in our journey!

Sandra Abrevaya @sabrevaya

10 months ago

Thank you @NPR for letting me speak my caregiver truth - that when I didn't have external caregiving support it was "imprisonment" and "hellish" and when we finally got external help, it racked up to $300k plus/yr, no coverage. #CaregiversCryForHelp npr.org/2023/06/27/118…

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I held Scott’s hand as he took his last breath. Felt his pulse weaken and hand turn cold. I consider it the highest honor to have been by his side while he passed. But also a curse. The trauma from it will never leave me. But I would do it all over again for him. ❤️ #EndALS

On #LouGehrigDay we remember an American icon and strive to honor his legacy. Visit MLBTogether.com/4ALS to see how you can help in the fight against ALS.

Thank you @MLB for being such a good partner in the fight to end #ALS. #LouGehrigDay is June 2nd, but your team works with @LG4Day year round to have the greatest possible impact on that day.

MLB @MLB

11 months ago

On #LouGehrigDay we remember an American icon and strive to honor his legacy. Visit MLBTogether.com/4ALS to see how you can help in the fight against ALS.

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#LouGehrigDay with @Dodgers

Had lunch at Buffalo Wild Wings today with my 19 year old son. As he was attempting to pay our bill, our server told us that it had been picked up by a generous gentleman two tables over who had watched my son patiently feed me. Thank you kind sir! #RandomActOfKindness

Some people are critical of me & my friends posting about our positive experiences with #NurOwn, saying that you can’t believe what you read on social media. The irony is not lost on me that these critics use the same social media to spout their uninformed opinions to raise doubt

Thank you @Forbes for covering our story and the work we are doing with #axeALS forbes.com/sites/stevenaq…

We’ve said it before & we will say it again. When we speak of Eric’s access to “experimental therapies” we are talking about #NurOwn. We name the drug but they don’t always put it in the article. NurOwn is the reason why Eric is still doing well. We won’t stop fighting for it.

I hope you will sign up to see one of @synapticure's amazing specialists so that they can help set you up with at-home PT. I hope you will not make the same mistakes I did. That is why we built Synapticure. Here's to fighting our diseases. synapticure.com

I made the mistake of stopping PT because it was too hard to travel for the appointment and because of Covid. That is why one of the first partnerships that @synapticure built was with @getlunacare to ensure that everyone is able to access PT from their home. (2/3)

A quick thread for people living with ALS, PLS, and Parkinson's. I know it may be hard to watch this video if you are at a different stage of your disease. The reason why I shared it is to encourage us to keep fighting and to make sure you do not make the same mistakes I did.

Brian Wallach @bsw5020

a year ago

I walked again today. Only this time I walked twice as far. Not today ALS. Definitely not today.

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I love to travel. To see new places. To see old friends. To make new friends. But every time we go home, I remember that there is no place like home. Good night moon.