Susan Nephew

ALS warrior

[Brian Wallach @bsw5020]

In exactly one week @US_FDA and @BrainstormCell will meet to discuss NurOwn.

The ask from the ALS community is simple: Give NurOwn an Advisory Committee Meeting like every other treatment.

It’s time to let the science speak for itself.

[Susan Nephew @NephewSusan]

@pjgreen I was denied Radicava ORS because I didn’t meet the criteria for the trial…. Apparently, I’ve lived longer than expected so I don’t deserve any medications. Seriously???

[Susan Nephew @NephewSusan]

In the last five years, ALS has changed everything for me except for one thing: I am still alive.

[Susan Nephew @NephewSusan]

@mrmaness1 Yes, I’ve seen progression this year too. But I’m going to see 2023!! 💪

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Over 30,000 signatures in less than a week!
The #ALS community is unequivocal in what they want!

#NurOwn

We know #NurOwnWorks
We've watched people regain function!

@BrainstormCell #FileTheBLA
@FDACBER #NurOwnNow

@bsw5020 @als_now @iamalsorg @stevens_nation
@LisaLegacy4ALS

[Susan Nephew @NephewSusan]

Thank you #SenSchumer for supporting #ACTforALS! ❤️

[Susan Nephew @NephewSusan]

Thank you #RepStephanik for supporting #ACTforALS. ❤️

[Susan Nephew @NephewSusan]

@BrainstormCell First #ACTforALS. Now if #BrainstormCell would file a BLA, all my wishes for Christmas will come true!

[Susan Nephew @NephewSusan]

#Brainstorm please file the BLA for #NurOwn!
That’s all I want for #Christmas.
Give people living with #ALS hope for #2022!

[Jeff Cranmer @jeff_cranmer]

W/#ACTForALS on its way to full @EnergyCommerce, expect $ALS patient advocates @iamalsorg @JamieBerrysALS @Michell62614519 to keep pressing @US_FDA, Congress to broaden access to therapies in the clinic @RepAnnaEshoo @RepMikeQuigley https://t.co/8Q6p47JUJU

[Susan Nephew @NephewSusan]

People living with #ALS need access to #NurOwn NOW.
#NoTimeToDie

[Mark bedwell AlS @Markbedwell11]

@pulte Did you know that Als is treatable in in some people right now? Would you help me get the word out? I am dying of ALS and I want to live longer and I want 30,000 other Americans to live longer also.

[Susan Nephew @NephewSusan]

#GirlDad I miss my Dad but I’m glad he isn’t here to see what #ALS has done to my body. We need #ACTforALS and #NurOwn. No father should watch his daughter succumb to this horrendous disease. And no daughter should see it destroy her father! #NurOwnWorks #DrugsInBodies

[Sadhvi Mayuri Om @Mayuri_Saxena]

Did you know I was your age when my symptoms started @AOC ? Five years later, I am on life support. #ALS can happen to anyone. Where will you be five years from now? Co-Sponsor ACT for ALS today #ALS

[Susan Nephew @NephewSusan]

@ChrisMurphyCT @RepJohnLarson @SenBlumenthal Please consider supporting #S1813. I wish I could describe the feeling of hopelessness a person living with ALS feels when there are promising treatments but they are denied access to them! #DyingWaiting

[Susan Nephew @NephewSusan]

@RepSpeier Please consider supporting HR3537 once again this year!

[Susan Nephew @NephewSusan]

@CBSSunday If #NurOwn were a drug for cancer or Alzheimer’s, it would have been approved by now. People with ALS deserve the right to treatments that could possibly improve their quality of life as well as give them more time! Please show compassion #FDACDER. I’m #DyingWaiting!

[Susan Nephew @NephewSusan]

@EBraeden @KathyCo74123384 @brainmatters10 @als_now @MauriceBenard @POTUS Thank you! Now let’s hope the #FDA can see reason!

[Susan Nephew @NephewSusan]

Congratulations #SavannahGuthrie on 10 years on the #TodayShow!
Please consider helping the ALS community by checking into the lack of treatments approved by the #FDA. We are literally #DyingWaiting for #DrugsInBodies. We could use a fighter in our corner like you!

[Susan Nephew @NephewSusan]

Lou Gehrig died 80 years ago today.
Sadly, there are still no FDA approved treatments to significantly slow progression in the disease, ALS, that took his life at age 37.
#DyingWaiting
#DrugsinBodies