Jamie Smith

Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.

[Steven St.John @SSJWHB]

Here is some info about the event we just discussed on @newdaywithssj. For more info: [email protected]

[Jamie Smith @JamieLW8]

@pjgreen Yes, that was the same for us too. I totally agree. They also offered an aide to do bathing but Scott never used them bc he trusted me or his caregiver more with that task. If hospice could have provided a caregiver I would tell everyone to avoid the clinic & use hospice!

[Jamie Smith @JamieLW8]

We got the best care at home from hospice. They did 100x more, were quicker to respond and were just as knowledgeable as our ALS clinic. But people shouldn’t be forced to go on hospice before they are ready to get the necessary care at home.

[Phil Green @pjgreen]

If we truly believe in multidisciplinary care for ALS, shouldn’t home health aides be part the multidisciplinary team? Multidisciplinary care shouldn’t be limited to higher functioning #ALS. Later stage ALS requires a different type of care that’s as multidisciplinary as it gets.

[Jamie Smith @JamieLW8]

@nadia_sethi @biogen @MGHNeurology @WashUNeurology ❤️❤️❤️

[Jamie Smith @JamieLW8]

This was the trial Scott participated in. He (and our family) sacrificed SO much for this trial. Scott was convinced it would be the drug that changed ALS. It’s a very sad day, but I’m grateful for @biogen, @MGHNeurology & @WashUNeurology for treating Scott so well in the trial.

[Ionis @ionispharma]

Today, with Biogen, we announced results from the topline Phase 1/2 study of our investigational drug in people living with amyotrophic lateral sclerosis (#ALS). For more information about this program: https://t.co/5U1iHA8mzU

[Jamie Smith @JamieLW8]

@VPResearch_ALS @biogen @MGHNeurology @WashUNeurology Thank you, David. Considering we had just had a baby when the trial started it was a huge sacrifice for everyone. I’m glad we weren’t alone in believing in the science behind it and it gave us hope in a hopeless disease. Now, I hope the data collected from it will lead to a cure!

[Jamie Smith @JamieLW8]

@RunningMama0522 @biogen @MGHNeurology @WashUNeurology Thank you, Mandi. Me too!

[Jamie Smith @JamieLW8]

Only a few days left to apply to receive funds if you are a young family with #ALS. Deadline is April 1st!
Apply here: https://t.co/txWGtm38up

[Jamie Smith @JamieLW8]

We are hosting the #FlexOnALS golf tournament again and we are picking 2 ALS families with children at home to receive the funds. I understand how little $resources there are for ALS, and I'd love to help relieve the burden. Click here to learn & apply: https://t.co/KCTtaf8qhz

[Jamie Smith @JamieLW8]

@gwenpetersen7 Thank you, Gwen! Doing what I can to help and pay it forward!

[Jamie Smith @JamieLW8]

We are hosting the #FlexOnALS golf tournament again and we are picking 2 ALS families with children at home to receive the funds. I understand how little $resources there are for ALS, and I'd love to help relieve the burden. Click here to learn & apply: https://t.co/KCTtaf8qhz

[Phil Green @pjgreen]

After living with ALS for 5 1/2 years, I’ve noticed something…

When you are early in your diagnosis & strongest, you are focused on treatments & efforts supporting research that may yield therapies. As you get weaker physically & mentally, your priority becomes care.

[Jamie Smith @JamieLW8]

@melissamaria510 Thank you Melissa!!

[Jamie Smith @JamieLW8]

@AKJKLove4Ever @nadia_sethi @imonfiya7 @ScottsFight @ALSTDI @kelsieswrites Thank you for such kind words, I know Scott would appreciate them. I’m so so sorry for what ALS is doing to you and your son, it’s so unfair. 💔

[Jamie Smith @JamieLW8]

@MinoSean Call me biased, but I think that’s why so many people were drawn to Scott and how he wrote. He told his heartbreaking truth, but in a beautiful way. It’s a hard balance, but it can be done.

[Jamie Smith @JamieLW8]

One year without you, forever to go.

❤️

#EndALS #FlexOnALS #widowhood #grief

[Lisa's Legacy for ALS @LisaLegacy4ALS]

Ready for prime time on Thursday at #alsmndsymp

Thank you @Team_Thriving @farmstronginfo @R1_Crew @als

Poster contains insights from PLWALS and caregivers for #ALS Clinics collected thru ALS Clinic Advisor. Have you provided your input? https://t.co/nBLuJm6EbY

[Jamie Smith @JamieLW8]

@alsadvocacy Listerine mouthwash. iykyk.

[Jamie Smith @JamieLW8]

@ScottsFight We had more financial support than many and it still wouldn’t have been enough. My Scott struggled with this too. It’s a heartbreaking realization and I’m so sorry you’re facing this. So unfair.

[Jamie Smith @JamieLW8]

@nadia_sethi Being on the other side of the disease gives you a different perspective. Not better or worse, just different. A clarity appears when you aren’t overwhelmed with plugging holes in this God awful disease. It’s a clarity we need. Just like we need hope and people like YOU. ❤️

[Dr. Nadia Sethi @nadia_sethi]

Long 🧵-sorry! Went through two years of ALS and grieved daily, watched my person lose everything-rapidly. It felt like a sinking boat- I would plug one hole and another would appear. We were trapped in our house with no escape: ALS+pandemic = very bad. 1/11