Jaana Gilbert

@PTAli1 @PattyMurray @iamalsorg I’m so sorry you have to go though this shit on top of dealing with ALS. My late husband didn’t have a trache nor was he completely paralyzed, and that still was a lot to deal with. Sending you love and strength.

Hospice is discharging K, @PattyMurray. I filed an emergency appeal w/Medicare as advised. Submitted letters from other HCPs. Heard today we won. Joy! 2 hrs later, told error made, hospice has last word, appeal not valid, 'maybe another agency can take her'. @iamalsorg. Its 1/5

@j_makr @armanalizad $3.01 gallona Pohjois-Carolinassa eli alle euro/litra.

@armanalizad Ja gaso maksaa euron litralta?

Terkkuja USAsta. Autot on valtavia, moottorit sitäkin isompia. Bensaa menee ja kumi palaa. Lihaa syödään jenkkilän kokosessa kylässä enemmän ku missään muualla. Ilmastokeskustelu ei oo tapetilla missään. Sitä ei näe eikä kuule kuuslitrasten V12 moottorien huminan alta 🇺🇸🏎️❤️

@TeamJacobWV Jacob is such an amazing young man. I pray his ALS goes into a long plateau and he gets a fighting chance. Make memories and cruise around in the Jungle Jim Cruiser named after my late husband. We loved that van ❤️

May is #ALSAwarenessMonth . Our family was touched by ALS in March of 2022 when our 23 year old son, Jacob, was diagnosed. He had participated in the #IceBucketChallenge 7 years earlier. Our ALS is the super aggressive P525L FUS gene mutation. #TeamJacobWV

@MinoSean @LaurenL18641152 @US_FDA Scott was the first I started following after my husband was dx Aug-21. Both Scott and my husband Jim #diedWaiting #EndALS #fuckALS

Just in the last 12 months, there have been 15 Accelerated Approvals for oncology treatments. These treatments ALL require postmarketing confirmatory trials to verify clinical benefit. FOR YEARS so many have fought & #DiedWaiting for the same @US_FDA urgency/flexibility for safe/effective #Nurown in 100% FATAL #ALS. HOW MANY MORE HAVE TO DIE before the @FDACBER treats #ALS with the same urgency and flexibility as cancer treatments? Congress, DEMAND that @DrCaliff_FDA exercise regulatory flexibility for a disease WITH NO SURVIVORS since 1869. Grant NUROWN Accelerated Approval with a Phase 4 postmarketing study. #NurownIsSafe #NurownWorks fda.gov/drugs/resource… @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepDonBacon @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenatorHick @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis

@onein300 @KRob8753 @alsassociation @iamalsorg Check on connections on who owns the video company…

@KRob8753 @alsassociation @iamalsorg Shocked at amount paid to video company! Surely should have done free/or for token fees for the cause??! That’s a lot of donor money that could have been spent on research or patient grants? Where is the Research funding? I could not find any research funded? I’ll check again.

@racing_als @TeamHendrick I’m already in tears and I’ve only seen on small part of it.

Ya’ll!! We CANNOT wait to show you the amazing work that the Redeye Designs team did yesterday to update our wrap for the 2023 season, & cannot thank them enough for their friendship and support!! Just an amazing group of people and we cannot recommend them enough! #thankyou

@alsassociation @BrainstormCell @US_FDA Too little, too late for my husband. He died waiting, January 13, 2023 16 months and 17 days after diagnosis.

Yesterday, @BrainStormCell announced @US_FDA has agreed to an advisory committee for NurOwn, but no date has been set yet. You can read our updated position on NurOwn here: als.org/research/emerg…

@racing_als @US_FDA That’s awesome news!!!!!! ❤️❤️❤️

GOOD NEWS!! My brother was just notified that they built a new supply chain - He should get meds soon! Praying that he can regain all the muscle control that was lost while off Clenbuterol. @US_FDA , This NEVER should have happened - You need to fix the system!! #ALS #mnd

@racing_als @US_FDA @alsassociation @ALSTDI @iamalsorg @AnswerALS @als_now @FDA_Drug_Info @ALSHF @up_als @stevens_nation This is wrong in so many levels! Time to get it off the black market if it can’t be obtained any other way.

Dear @US_FDA , I am watching my brother’s health decline drastically because of a full ban you placed without caveats for the terminally ill! He has a prescription, this med has kept his condition plateaued for over a year, but now he cannot get it because of you!! #ALS #MND

@BenNadel @cf_camp I need to apply for my very first U.S. passport, will do next week, expedited of course. Then crossing my fingers.

Happily ever after in 2001. What #ALS took from me in 2023. #ENDALS #fuckALS #JungleStrong

@Hendrick24Team I will be cheering you guys on knowing that Jim is watching and cheering you on from up above 💔

Do it for Jungle.

@JimMourey @becky_mourey @iamalsorg @ComCareALS @alsone_official I'm so sorry for your loss 💔 My love lost his battle 5 weeks ago 😭

I have no words, just tears 💔

@Jasmine47591510 @TeamHendrick @Hendrick24Team My husband Jim "Jungle" Gilbert.

@TeamHendrick @Hendrick24Team Who died?

In special memory. One last ride.

@TeamHendrick @Hendrick24Team 😭😭😭😭😭😭😭😭 Thank you for doing this to honor my late husband. #endALS #diedwaiting #JungleStrong I miss you Jim 💔

Thank you @donnierfloyd for getting these for me. #DAYTONA500 #ENDALS #diedwaiting #JungleStrong #OneLastRide thank you @TeamHendrick ❤️

@racing_als @klingensmith_j @TeamHendrick @Hendrick24Team @iamalsorg @TeamJacobWV Thank you for your kind words. Love you guys ❤️

@klingensmith_j @JaanaGilbert @TeamHendrick @Hendrick24Team @iamalsorg @TeamJacobWV It most certainly does; my brother is still fighting ALS. For Jim, his wife @JaanaGilbert was as strong, loving and supportive of him as anyone in the history of the fight! We have a lot of respect for the love she showed him!! #Respect #als #MND #Caregiver

Sad day today, picking up Jim’s van to get it ready to go to it’s next ALS family, but we know he would like that his van will be helping others. We dropped this van off a year ago last Wed. Crazy how fast this disease took him, and a good reminder of why we race. #endals #MND

He made it to P1 with @allyracing @Alex_Bowman

My love will have his “one last ride” at the Daytona 500 as he will be on all 4 @TeamHendrick cars @Hendrick24Team , @allyracing, @Hendrick9Team, @Hendrick5Team, @hendrick48team #endals #diedwaiting

@allyracing @Alex_Bowman @TeamHendrick Congratulations Alex. Thank you for taking Jim with you on his last ride. I see his sticker in the back 💔 #endALS #JungleStrong

.@Alex_Bowman and the #Ally48 team secured the pole with a 49.536. #Daytona500

History made.👊 @Alex_Bowman makes history with his sixth consecutive #Daytona500 start with his P1 qualifying effort. What a way to start the race weekend for the #Ally48 team!