Top Tweets for #ALSvet
@united @andreaSgoodman @bsw5020 @sabrevaya @katiecouric @PrimeVideo @iamalsorg Well done @united for having No Ordinary Campaign. I sat on yoour plane from Belize to Houston as a widow to an #ALSvet and next to me was a widower to his beautiful wife that also died from ALS. Thank you for helping to spread awareness about this terminal disease!
Widow Truth: When you celebrate 32 birthdays with your husband, you still remember him even after he has passed. Raise a toast to 55 for my #ALSvet who now celebrates in Heaven!
If you are in the ALS Caregiver/#ALSvet Community, check out this new podcast. Yes, shameless plug . It's mine & @MaryHahnWard's new podcast. We are open and honest about living the ALS life and what it looks like beyond
ALS Caregivers and Beyond https://t.co/rJyHkH3n3v via @rss
I'm excited to be heading to D.C. to support the #ElizabethDoleHomeCareAct. The removal of the 65% cap is personal for me and the #ALSvet community. @JudgeJohnCarter @JohnCornyn @tedcruz this Bill should be on your radar to vote YES.
THIS IS HUGE! Thank you @RepBrownley @RepBost and other members of the @HouseVetAffairs for moving H.R.542 forward. The removal of the 65% cap is necessary. I fought for skilled care in the home for my #ALSvet and was able to access but I am the exception. #revisedcboforthewin
‼️Today, @HouseVetAffairs unanimously voted to report H.R. 542, The Elizabeth Dole Home Care Act, to the full House of Representatives! Thank you @RepBrownley, @RepJackBergman, @RepBost, and @RepMarkTakano for your making military & veteran caregivers a top priority in Congress.
Meet Ashley. She is the caregiver to her dad, an #ALSvet. Our ALS veteran families are everywhere quietly caring for loved ones, but Ashley is using her voice to amplify this ALS community. Thank you for stepping up and advocating, and welcome to the #EDFfamily. @DoleFoundation
2023 Dole Fellow Ashley Lee has a passion for improving the VA healthcare system and wants to help more individuals with ALS beat the average life expectancy. How? With care focused on increased quality of life. See how she makes a difference: https://t.co/ZlBexzLMgf
Meet my friend @MaryHahnWard She is a strong advocate for her #alsvet and fellow caregivers. I see you Mary.
DYK: veterans like Tom Ward have a 60% higher risk of developing #ALS? During #ALSAwarenessMonth, we want you to meet Tom’s incredible wife Mary. Since navigating Tom’s illness, she’s become an advocate for other ALS caregivers nationwide: https://t.co/nlPCQXdcne
Did you know that @VAHouston has determined an #ALSvet that is trached, vented, paralyzed and has a PEG is medically stable and does not need skilled nursing? This is despite a 100% service connection, SMC R2 rating and a VDC casemix K. Strange that on paper the veteran needs
If only the FDA worked as fast to approve ALS treatments as they did the vaccines. My #ALSvet died last year. If only...
One would never know that #ALS is a rapidly 100% FATAL disease by this timeline.
12/27/22-@FDACBER grants Nurown Type A mtg
1/11/23-date of Type A mtg
3/27/23-#FDACBER grants AdComm hearing
5/2/23-ALS patients #DyingWaiting on FDACBER announcement of AdComm hearing date...
If only the @US_FDA & @DrCaliff_FDA could see firsthand the EXTREME suffering that is occurring EVERY DAY for EVERY PERSON diagnosed with #ALS & our families, maybe there would be some urgency.
So many have #DiedWaiting during this time & there are undoubtedly many more months until the AdComm hearing is done & the FDA has to arrive at a decision on approval.
@lisamurkowski @SenatorBraun @RepAnnaEshoo @brettguthrie @ChrisCoons @rosadelauro @janschakowsky @RepMikeQuigley @RepAndyHarrisMD @BillCassidy
Did you know that the @DeptVetAffairs in Houston denies skilled nursing for a paralyzed, trach and vent #ALSvet but approves skilled care for a paralyzed, trach and vent SCI vet.
Widow Truth: Another step taken as a survivor. Selling the Handi-Van that we used for Tom. I know I needed to do this but still makes my heart sad. @UnitedAccess in Pflugerville Tx, thank you for helping me along with the ALS journey both pre and post journey. #ALSvet
Widow Truth: That made me take a breath. Something simple, but when you lose your forever emergency contact it's hard. #widowtosurvivor #Tomstroops #ALSvet @TAPSorg @DoleFoundation
Widow Truth: The care of my #ALSvet was intense. So much so I put my own health needs on the back burner for years. It's been 3 months since he died and I am now focusing on me. I made the appt. I need to show myself the same love and care I showed my husband. #Tomstroops
Widow Truth: Getting out to have lunch with Tom's mini-me and enjoying the pretty day....and feeling guilty because I am enjoying the day. This is widow life. #ALSwidow #ALSvet #missingmyhusband #caregivertosurvivor
Today in the #ALSvet Advocacy space, it was a good day. @RunningMama0522 @shellyhoover, Mary Ward and myself had a meeting with White House Staff regarding the inequity of care among VISNs for ALS Veterans. Our community is small, but today our voices were mighty! They saw us!
Hard topic but so needed-Caregiver to Survivor. When my #ALSvet takes his last breath, I will take my first as a widow. #EDFVABOLDSTEPS @DoleFoundation @TAPSorg
Thank you @DoleFoundation for allowing caregivers like me to be a part of the Convening while caring for my #ALSvet.
@shellebshi @KRob8753 Because of your Dad's willingness to be part of it, the ball moved down the field. Every #ALSvet that came after the 2008 decision is beyond grateful he chose to be part of the study.
As a caregiver to an #ALSvet one of my many fears have been about what happens when he dies. Thank you @TAPSorg @DoleFoundation @MilVetCaregiver for ensuring the transition from caregiver to widow has support to guide us through our grief
TAPS recognizes the urgent need to support families who've lost #military loved one after being a caregiver.
We're proud to work @doleFoundation & @milvetcaregiver to provide support to this population.
#MonthoftheMilitaryCaregiver #HiddenHeroes
https://t.co/RLNkx2or0b
@RepBrownley @RepMarkTakano @SVACDems @VetAffairsDems the #ElizabethDoleBill eliminates the 65% Limitation but high acuity veterans need help now. It's why @SanAntonioVAMC and Dr. Flynn is denying private duty nursing to trached,vented & paralyzed #ALSvet yet other VAMCs allow it
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