Jesalyn Astafyev

fighting for treatment for ALS

[Jesalyn Astafyev @JesalynAstafyev]

My brother is on the right; He has ALS. Pls dont let his time run out WAITING for safe/promising treatments STUCK in @US_FDA trials. We need ACCESS now. #als #NurOwn @BrainstormCell @Cylebo @DrWoodcockFDA @SteveFDA @POTUS @VP @FLOTUS @realDonaldTrump @HHS_ASH @RepScottPerry

[Smithstrongmom @Smithstrongmom1]

We have over 100 Bipartisan co-sponsors in just 3 months on H.R. 7071 - ACT for ALS. Let's get this done!!!
@alsassociation @realDonaldTrump @WhiteHouse @MarkMeadows @SecAzar @SteveFDA @statsnews @HHS_ASH @Surgeon_General @POTUS @DonaldNorcross @FrankPallone @CoryBooker

[Smithstrongmom @Smithstrongmom1]

H.R. 7071 Expanded Access to promising new therapies
Bipartisan co-sponsors, 56 Democrats, 45 Republicans
Approx. 30,000 Americans have ALS. ACT NOW @alsassociation @realDonaldTrump @WhiteHouse @MarkMeadows @SecAzar @SteveFDA @POTUS @DonaldNorcross @FrankPallone @CoryBooker

[Jesalyn Astafyev @JesalynAstafyev]

@RepScottPerry @MikeKellyPA @RepHoulahan @RepSusanWild cosponsor #hr7071 and help save my 30 year old brother, who is fighting #ALS .

[Smithstrongmom @Smithstrongmom1]

Come on team...win the game!! H.R. 7071 -Act for ALS @alsassociation @realDonaldTrump @WhiteHouse @MarkMeadows @SecAzar @SteveFDA @statsnews @HHS_ASH @Surgeon_General @POTUS @DonaldNorcross @FrankPallone @CoryBooker

[Smithstrongmom @Smithstrongmom1]

No mountain to high, no valley to low. Co-sponsor H.R. 7071 @alsassociation @realDonaldTrump @WhiteHouse @MarkMeadows @SecAzar @SteveFDA @statsnews @HHS_ASH @Surgeon_General @POTUS @DonaldNorcross @FrankPallone @CoryBooker @stephenlynch

[WORLD FIGHT AGAINST ALS @LuchaEla]

#Nurown #Nurowneurope #NurOwn_UAE #NurOwnworld #nurowncanada #ENDALS
A) We ask to @US_FDA Approve #Nurown
B) We ask to @EMA_News Approve #Nurown

[Marina Bazan @MarinaBazan7]

The Whole ALS/ELA/MND/SLA World is Watching, Waiting, Hoping, and Praying for HR. 7071 🇦🇷 🇺🇸☮️❤️💪🙏
@RepAndyKimNJ
@RepTedLieu
@HouseDemocrats
@HouseGOP

[Jesalyn Astafyev @JesalynAstafyev]

This link makes it SIMPLE to contact your Congress person. Help us get this bill for accelerated treatment rolling for ALS. Click the link and send an email! https://t.co/h9iN6qMI5U

[Shah Minokadeh, M.D. @MinoShah]

#ALS continues to ravage our bodies while denied lifesaving #Nurown treatment stuck >10 years in the @fdacber.

PLEASE HELP!

@realdonaldtrump @MarkMeadows @SecAzar @VP @SteveFDA @JeffFortenberry @kellyannepolls @NIHDirector @HHS_ASH @chriscoons @senatorbraun @lisamurkowski

[Deborah Midgley @DeborahMidgley1]

sanctity of human life! Yet, you remain SILENT on signing an EO for ALS. @POTUS , does it not matter that American citizens are dying needlessly? You know there are therapies out there that can help us! You need to act TODAY!

[No More Excuses ALS Watchdogs! @als_now]

Remember this week. Far more in ALS' "leadership" were proud to stand with people burning American cities, but said ZERO about pALS who went to DC last week. Well, we're certainly learning a lot about ALS this week. Remember this scenario donors. SERIOUSLY. #ALS #ENDALS #TRUE

[No More Excuses ALS Watchdogs! @als_now]

I'm aware of ONE who was proud to support an ALS protest for action. ONE. Any others? Should we post all the others who were confused about what they get PAID to do? Maybe we should remember how serious ALS is and get a dying f'ing "community" back on track. STOP! #ALS #ENDALS

[No More Excuses ALS Watchdogs! @als_now]

Especially as tomorrow will be a GREAT DAY for (p)ALS, ACCESS, FDA action, and just like last year, ALS will continue to be changed by those who need it most. pALS will continue to fight for action to get DRUGS into bodies asap. #ALS #ENDALS

[Deborah Midgley @DeborahMidgley1]

Harsh reality:
Last week, one man died as
Racism killed him as
Others stood by and allowed it to happen.

This month:
496 people newly diagnosed
Hundreds died
ALS killed them
Our government stood by and allowed it to happen

Be the change !

[Smithstrongmom @Smithstrongmom1]

.@POTUS Do for #ALS what you did for #COVID. #ALS is 100% fatal!
Help my 30 year old son access promising treatments NOW! We do not have time to wait! #axeALS
@HHS_ASH @realdonaldtrump @US_FDA @NIH @NIHDirector @SteveFDA @HHSGOV @BrainstormCell

[Gwen Petersen @gwenpetersen7]

Imagine if COVID-19 went 150 years with no effective treatments or cures. Imagine if COVID-19 was 100% universally fatal. Now ask yourself, what would you do to find treatments and cures? #ThisIsOurReality #EndALS

[Marina Bazan @MarinaBazan7]

@HHS_ASH Sir please. ALS patients are dying all over the world with no need and very fast. YOU CAN AVOID IT. Please take the time to meet also @Markbedwell11 @ThurmanTough . #NUROWN DOES WORK AND SAVE LIVES TO WAIT UNTIL THE CURE APPEARS. Call @BrainstormCell change Als History

[Kandy Simons @KandySimons]

@HHS_ASH @NoMoreALS Thank you Admiral for your service. So many pALS rely on your action in making this disease treatable. On behalf of my 22-year old son @KadeSimons, NurOwn works! He participated in the phase 3 at Mayo, he responded positively and can tell that his body no longer has access.

[Gayle Boone @GayleBoone12]

@HHS_ASH I have ALS and participated in the NurOwn Phase 3 trial. It worked: my disease progression stopped while receiving treatments. My decline resumed after I no longer had access to the treatments. Please we need NurOwn access now.

[Kandy Simons @KandySimons]

@HHS_ASH @NoMoreALS Here is @KadeSimons with his lifelong bud, Carol. She and Kade developed quite the friendship and couldn’t wait to see each other each month! @MayoClinic has an amazing staff!