Provides ALS-patient reviews of ALS clinics.
Joined June 2024
- Tweets20
- Following61
- Followers24
- Likes12
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: arcg.is/1Xjfvy.
ALS Clinic Advisor retweeted
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
This Post is from an account that no longer exists. Learn more
ALS Clinic Advisor retweeted
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!
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: experience.arcgis.com/experi…
@gbla11yday #GAAD25 #ALSAwarenessMonth @TobiiDynavox @TeamGleason #inclusion
ALT Ye gaads! We're thankful for those providing accessibility. Note gaads is a play on the acronym for global accessibility awareness day.
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.
arcg.is/0DyP8D
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.
vcuhealth.org/news/making-su…
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."
Great map from the Mappers - shows which VA #ALS clinics are multidisciplinary (ALSA certified) and which have limited services or an ALS coordinator only.
arcg.is/08TKOe
@Team_Thriving's post is a wonderful tribute to our brave #veterans, Dr. Howard, & me (Advisor!)
ALS Clinic Advisor retweeted
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
Thank you to everyone who submitted an abstract for the 2024 Annual #NEALSMtg! We are thrilled to report that this year’s abstracts are published electronically in Muscle and Nerve.
View abstracts ➡ onlinelibrary.wiley.com/doi/…
📷
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: linkedin.com/posts/pat-dolan…
#ALS #ReviewYourClinic @farmstronginfo
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: facebook.com/profile.php?id=…
#paralyzedVets
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.
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. abc27.com/pennsylvania-polit….
#DyingWaiting @PennStHershey @TempleNeurology @UPMC @TJUHospital
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.
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.
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. ffm.link/als-clinic-survey
ALS Clinic Advisor retweeted
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.
ffm.link/als-clinic-survey
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.
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: ffm.link/als-clinic-survey
Welcome to ALS Clinic Advisor's premier post on Twitter! We're so glad you're here!
Review your ALS clinic: esriurl.com/alshubsurv
Look at all reviews: esriurl.com/alshubdash
Check out some cool findings: s3.us-west-2.amazonaws.com/l…
