Top Tweets for #ALSVets
Ron Faretra is a veteran living with #ALS who served 27 years in the U.S. Air Force. ✈️ @Ron_ALS shares his tenacity with the #ALS community by helping to move the needle for the next generation of people that will be diagnosed. In the past two years, Ron played an instrumental role in South Carolina’s commitment to budget $500,000 for #ALS care services. ✨ We thank you for your service and for demonstrating that we are #BetterTogether. 🇺🇸
#VeteransDay #EndALS
Widow Truth: Day 12 of a 19-day European adventure and I this girl continues to look for ways to bring awareness to ALS. ALS will always be a fight, I fight. I am keeping my promise to my late husband Tom. #ALSvets #Tomstroops @iamalsorg #iamanalssurvivor
To all Tx Reps @JudgeJohnCarter @RepLuttrell @RepEllzey thank you for supporting the Bill. 3 of the 5 Neys were from TX. @chiproytx @RepKeithSelf @RepArrington this legislation is what your veteran constituents need, so thank your peers for seeing what you could not. #ALSvets
Today, the Elizabeth Dole Home Care Act passed the House 414 – 5! 🎉 Thank you to all 414 Representatives who supported this pivotal legislation as well as our advocacy partners. We are now one step closer to improving the lives of veterans and caregivers across America.
Access to real, tangible in-home care is how we ensure veterans with ALS and their caregivers are able to journey through this disease by getting the resources they need and not spending precious time fighting for services. #ALSvets #Tomstroops
More and better access to home care: https://t.co/gRCqjVwouM
#ALSvets here is a webinar that might be helpful thanks to @CMAorg and @ReeveFoundation. Sometimes, you choose between VA and Medicare, b/c you are needing the path of least resistance. #endALS
We welcome you to join @CMAorg for our upcoming webinar, Medicare for Veterans Living with Paralysis
Part 1 on Wed, 10/4 from 2:30 - 3:30 PM ET
Part 2 on Thur, 10/19 from 2:30 - 3:30 PM ET
With thanks to @ReeveFoundation Quality of Life Grants Program
https://t.co/4zh39qOmtE
Episode 6: Scratching for Gratitude is now available. Gratitude can be a challenge to find some days. In this ALS Caregiver & Beyond life, Lara and Mary embrace a practice of mindfulness and gratitude. #ALSCaregiversandbeyond #ALSvets
https://t.co/zs41KsZK9K
@PVA1946 @AmylyxPharma @OhioHealth The news is great only if @DeptVetAffairs ensures all #ALSvets can be approved for it and not just those that have high ALSFRS. Follow FDA approval criteria and let neurologists decide who gets access and not a committee of pharmacists.
So very sad to learn @iamnicksloan @attacklifesloan passed. He was a husband, father and marine. #ALSvets fight until there is nothing left to give. Rest now Marine we will contine this fight. #attacklifesloan #Tomstroops
Thank you @derrickvanorden and @MLuttrellTX thank you for asking the question on accountability. It needs to extend to VAMCs and staff that have become complacent. #ALSvets #Tomstroops
@tomstroops @MinoSean @DrNealDunnFL2 @RepBillJohnson @RepMMM @RepGregPence @rosadelauro @SenBlumenthal @RepJohnCurtis @RepMikeQuigley @cathymcmorris @SenatorWicker I'm so sorry Lara. You are a hero for continuing to advocate for #veterans like Tom. Our military must do more to investigate cause & to give these veterans access to every drug they want to try in the clinical trial pipeline.
Tom deserved better.
#ALSvets
#ALSAwarenessMonth
I'm so sorry for your loss, Lara.🙏❤️ #ALSvets
There have always been a large number of veterans in Congress. 97 military veterans are members of Congress NOW
I'm tagging many of the Congresspeople who are Tom's fellow Air Force veterans below.
Maybe one of them will be kind enough to answer & tell us why Tom had to die WITHOUT HOPE.
It's disappointing that so little has been done by Congress & the @US_FDA to END military service related & 100% FATAL #ALS.
I don't know if the 97 military veterans in Congress now are aware of how HORRIFIC ALS is & that ALL of them are at an increased risk of developing ALS. #ALSvets
@RepDonBacon @RepHoulahan
@SenatorWicker @RepBrianBabin @RepChrisStewart @RepPfluger @RepPatFallon @RepLoudermilk @ZachNunn @VernBuchanan
@RepLuna @MilitaryTimes @RepLarryBucshon @lisamurkowski @MilitaryTimes @RepCardenas @HASCDemocrats @HASCRepublicans @MilitaryHealth @MilitaryOfficer @StateDeptPM @RepGuthrie @RepLarryBucshon @DrCaliff_FDA @RepMMM @SenBlumenthal @RepDonDavis @SenGillibrand @SenJackReed @SenatorBraun @RepBillJohnson @RepTedLieu @SenMarkey @SenMarkKelly @SenDuckworth @RogerMarshallMD @SenRickScott @SenDanSullivan @RepAnnaEshoo @RepAndyHarrisMD
@MinoSean @DrNealDunnFL2 @RepBillJohnson @RepMMM @RepGregPence @rosadelauro @SenBlumenthal @RepJohnCurtis @RepMikeQuigley @cathymcmorris @SenatorWicker That handsome Airman on the left is my late husband. Lived 6 yrs with ALS and last 3 yrs trached, vented, and paralyzed. He passed July 15, 2022 #fuALS #ALSvets
@MinoSean @DrNealDunnFL2 @RepBillJohnson @RepMMM @RepGregPence @rosadelauro @SenBlumenthal @RepJohnCurtis @RepMikeQuigley @cathymcmorris @SenatorWicker That handsome Airman on the left is my late husband. Lived 6 yrs with ALS and last 3 yrs trached, vented, and paralyzed. He passed July 15, 2022 #fuALS #ALSvets
@Johnny_Joey, thank you for your piece on the VA. I advocate for #ALSvets and the mountain terminal veterans must face at the VA is ridiculous. Keep shining the light on the VA government care.
I'm bringing these two fierce women with me as I travel to DC to meet with @USHVHA Dr. Elnahal to advocate for Veterans living with ALS.
We need to push towards consistency in care for #ALSvets across all VISNS. Your ZIP CODE should not be the determining factor in the level of care at the VA. @DeptVetAffairs @USHVHA @PVA @wwp. This impacts all high acuity veterans
May is #ALSAwarenessMonth. This is our ALS-Tom was 47 @ diagnosis, trached/vented at 50, and died at 53. There is no cure, and there is no drug to make this a manageable disease. It. Is. Terminal. I miss him so much, but I do not miss ALS. #fuALS #ALSvets #Tomstroops
#ALSvets. Veterans Voices: Marine takes on ALS https://t.co/n7WJIIltFz
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