ALS Clinic Advisor

Provides ALS-patient reviews of ALS clinics.

[ALS Clinic Advisor @ALSClinicSurvey]

Today on Lou Gehrig Day, GeoALS & #MLB commemorate #ALS warriors.

86 years after Lou gave his famous speech, ALS victims have the EXACT SAME prognosis.

Help fix this via one of the calls to action at the bottom of this storymap: https://t.co/sHSYJhIIob.

[Shah Minokadeh, M.D. @MinoShah]

The #ALS community urgently implores @BrainstormCell & CEO @Cylebo to leverage the @DrMakaryFDA & @FDACBER listening tour

This is a critical opportunity to champion #NurOwn's Accelerated Approval. Present the compelling totality of evidence: the robust Patient-Reported Outcomes, the statistically significant biomarkers, and the clear, plausible mechanisms of action

With the Phase 3b trial now cleared under SPA & serving as the confirmatory study, the path for this rapidly 100% fatal disease is clear.

Already 15 years after the #NUROWN Phase 1 trial, ALS patients cannot endure further delays. 1

Urge @US_FDA to fully embrace its own 2019 ALS guidance, designed for flexibility & patient-centricity in life-threatening conditions. #ALSCommunity #AcceleratedApproval #NurOwn

@SecKennedy @MartyMakary @RepAndyHarrisMD @lisamurkowski @realDonaldTrump @iamalsorg @andreaSgoodman @youralsnetwork @RepGuthrie @SenJohnCurtis @TeamCalvert @pjgreen @klink52 @MaryKayTurner1 @Smithstrongmom1 @limpbroozkit @DrMenghis @KylanMorris1 @nicolecimbura @RepDonBacon @aVoice4ALS @RepGusBilirakis @DickDurbin @RepSchakowsky @rosadelauro @RepMikeQuigley @cathymcmorris @GovBraun @RainConsulting @kjmark @stevens_nation @Vita_Victoria2 @StacyLindborg @LorriCav @DrHMelamed @carbajalphoto @NotSoVanilla @pwallach87 @HaterAls @_wobblewobble @CraigReagan2 @als_now @RepBrianFitz

[Live Like Lou @LiveLikeLou4]

As part of #LouGehrigDay, LLL will join @phideltatheta & @PermobilCares to honor Gehrig Award Finalist Freddie Freeman & present a special gift to a local ALS family before the 7:10 p.m. game on 6/2! ⚾️💙

We will be in Section 48FD. Purchase seats near us & come say hi!

[ALS Clinic Advisor @ALSClinicSurvey]

Accessibility in devices, websites, healthcare, the workplace, etc. CHANGES THE GAME for the disabled.
If you have #ALS, check out clinics or take the survey at: https://t.co/vQug31Z6sy

@gbla11yday #GAAD25   #ALSAwarenessMonth  @TobiiDynavox   @TeamGleason #inclusion

[ALS Clinic Advisor @ALSClinicSurvey]

We developed a map to show ALS Clinics in relation to the LA fires. The map shows the latest fires & air quality. ALS IN Wonderland Foundation is providing FREE housing to ALS families in LA affected by the fires. Contact them at 501-492-6955.

https://t.co/3WUpxllqnA

[ALS Clinic Advisor @ALSClinicSurvey]

We salute Dr. Kelly Gwathmey, director of the VCU Health ALS Clinic & chief of Neuromuscular Medicine, for her hard work on behalf of people with ALS.

We are grateful for her time and insights in support of ALS Clinic Advisor.
https://t.co/qUJLGG22WE

[ALS Clinic Advisor @ALSClinicSurvey]

Thank you @johndhopkins and @HopOnACure for all your hard work to find new treatments for #ALS.

[CBS Mornings @CBSMornings]

In 2021, @johndhopkins was diagnosed with ALS and the next year, Hopkins and his wife Jen started @HopOnACure to raise money and increase awareness.

Now, Hopkins says his new song, “Each Other,” focuses “on things that matter."

[ALS Clinic Advisor @ALSClinicSurvey]

Great map from the Mappers - shows which VA #ALS clinics are multidisciplinary (ALSA certified) and which have limited services or an ALS coordinator only.
https://t.co/TURNibpqon
@Team_Thriving's post is a wonderful tribute to our brave #veterans, Dr. Howard, & me (Advisor!)

[ALS Clinic Advisor @ALSClinicSurvey]

@Team_Thriving captures so well how we feel about our #veterans--willing to give up their lives for our country.
See post: https://t.co/XcFBnibgaf
He also mentions how Advisor (that's me!) shows that VA #ALS Clinics get higher ratings than their non-VA counterparts.

[Mandi @RunningMama0522]

There are some pretty great abstracts this year!

Two that stand out to my totally and completely unbiased eyes are the submissions from the @ALSClinicSurvey and the @ALSHF Veteran ALS Action Committee 😎

#endALS

[ALS Clinic Advisor @ALSClinicSurvey]

Today my sister, Clinic Locator, went to the gym & got bulked up a bit. She's got a lot more clinics now, including international clinics. See @Team_Thriving's release announcement: https://t.co/CosN2JIQgf
#ALS #ReviewYourClinic @farmstronginfo

[ALS Clinic Advisor @ALSClinicSurvey]

^^^ #PVASummit !

[ALS Clinic Advisor @ALSClinicSurvey]

We're only 18 minutes away from a live-stream of Ret. Airforce General John Dolan at the @PVA1946 conference talking about barriers to care for #Veterans living with #ALS.
See it on FB at: https://t.co/rtWSVFXWX7
#paralyzedVets

[ALS Clinic Advisor @ALSClinicSurvey]

The ALS Clinic Advisor is proud to be a part of the Paralyzed Veterans of America Summit. We look forward to sharing how the Clinic Advisor can be used to identify barriers to healthcare in the VA landscape.

[ALS Clinic Advisor @ALSClinicSurvey]

Kudos to @repkylemullins and @repbryancutler for making collaboration in the #ALS disease space a priority--key to finding a treatment after 150 years of little collab & no treatments. https://t.co/qKgU8xBWZ3.
#DyingWaiting @PennStHershey @TempleNeurology @UPMC @TJUHospital

[ALS Clinic Advisor @ALSClinicSurvey]

Gutted to learn of legendary @glen_rouse 's passing. A critical contributor to all Mappers team initiatives, especially the legislative apps, Glen fought #ALS hard, yet with such grace. Our hearts will never be the same. Love you Glen.

[ALS Clinic Advisor @ALSClinicSurvey]

Today may be the last day of our collaboration with @HopOnACure but you can complete a Survey anytime.
The information collected helps pALS and cALS learn where they can get the clinic care they are looking for.

[HopOnACure @HopOnACure]

It’s the last day of @ALSClinicSurvey Survey Week, and we’re almost halfway to our goal! We need 751 surveys to reach the goal of 1,500. PALS and CALS, your first-hand experience is invaluable as people look for the right ALS care. https://t.co/E9zQQZiiAV

[HopOnACure @HopOnACure]

Yelp for ALS? Welcome to @ALSClinicSurvey! PALS and CALS please share your first-hand experience with your ALS Clinic to help others understand what clinics offer as they look for care. It takes 8-10 mins & is eye-gaze friendly.

https://t.co/E9zQQZiQqt

[ALS Clinic Advisor @ALSClinicSurvey]

Thanks so much for the shout out, @HopOnACure !
It's so important that patients, diagnosing doctors, case managers, etc. have a known place to go for authoritative clinic information.

[HopOnACure @HopOnACure]

Calling all PALS and caregivers: Help us get to 1,500 @ALSClinicSurvey surveys this week. A record 31 surveys were recorded on Monday, let's keep it going!

Take the survey, tell a friend: https://t.co/E9zQQZiiAV

[ALS Clinic Advisor @ALSClinicSurvey]

Welcome to ALS Clinic Advisor's premier post on Twitter! We're so glad you're here!
Review your ALS clinic: https://t.co/XA57vkrYt5
Look at all reviews: https://t.co/zXG1SjhuG1
Check out some cool findings: https://t.co/gTrutPlFvf