Top Tweets for #ALSclusters
Encourage everyone to register for this meeting.
CDC funds great research addressing #ALS causation.
But we need to improve what is collected by this registry, including the urgency with which data is reported & the scope of the #exposome data.
#ALSclusters #EndALS #ALSregistry
Check out California Capital International Documentary Film Festival on September 30th.
@RayDorseyNeuro is a hero for his research re role of the #exposome in causing #Parkinsons. Similar environmental risks as #ALS & the #ALSclusters we've identified.
#Neurotwitter #EndPD
Exciting news! Our documentary has been selected for the California Capital International Documentary Film Festival 2023!
Film Screening Info:
Saturday, September 30th, 1:30 - 2:30 PM
Venue: American River Room - Rancho Cordova City Hall
Purchase Tickets: https://t.co/NWg1we8OBF
Think ALS is underreported?
"What you don't measure you can't improve"
Encourage everyone w #ALS to join webinar hosted by @LesTurnerALS & @CDCgov talking re#ALSRegistry
WHEN
Thursday at 1pm ET, 10am PT
REGISTER
https://t.co/wpP23RmCnO
#exposome #ALSclusters
@AndreaBackman05
@reshmagar @US_FDA @CSPI We know of association of heavy metals w various neuro diseases, including #ALS.
It's not just an issue for @US_FDA. Need @NINDS @CDCgov & @EPA to invest in exposome, toxicology & iPSC research re heavy metals & neuro diseases, including #ALSclusters
@cecelou18 @BLaw
. #Michigan & #OHIO = #1 & #2 in fatal #ALS
We put future generations at risk bc we don't $ research into causation & #ALSclusters
We are ID'g clusters & passing hypotheses to researchers
Where are toxins & clusters in your state?
Join us:
https://t.co/lr7NmaG2vH
@bsw5020
8 people from a 35 mile radius of my hometown in Ohio are victims of ALS, 4 have died, 4 are living this hell. Who will be next? The FDA needs to act now! We need NurOwn approved now! #NurOwn #NoAdComNoVoice #EndALS @JDVance1 @DrCaliff_FDA
Algal blooms are associated w 100% fatal & paralyzing #ALS. #ALSclusters exist along lake & coastal communities esp w substinence fishing.
Cyanobacteria BMAA is a non protein amino acid that replaces L-Serine in the #SOD protein.
@CleanUpOurActs
@EPAresearch @CDCEnvironment
Qs re #ALSregistry, #ALS prevalence, #ALSclusters & causation? Register for @CDCgov two-day meeting next week, 8/29-30.
On Tues at 10:15am ET - pALS will give feedback
➡️ Register at: https://t.co/ktGikDJers
➡️ Agenda
https://t.co/fHwoOGJj1M
Thx @DanielleVsALS
Each year ATSDR brings together ALS patients, advocates, and experts at the National ALS Registry Annual Meeting. The meeting will be held virtually on August 29th and 30th. Register at: https://t.co/BcFXA5dw13.
"Statistically possible" when same exposome
Unrelated people in same households & neighbors get #ALS. Need @NINDSdirector @CDCDirector & @EPAMichaelRegan to investigate #ALSclusters & need @FDA to collect exposome data in trials.
Ex: IA town of 769 has 5 cases. 125x risk
My 16 yr old helped me out volunteering at Betty’s run for ALS. He was talking to the firefighter he was working with about his grandparents both dying of ALS within 4 yrs of each other. “That’s statistically impossible”. Perhaps, but it happens… I have met 2 others via twitter.
. #ALSclusters among several police depts. If you know of #LawEnforcement officers w #ALS, please reach out
Exposures to Lead in firearms training, chemicals, concussions, 9/11 are risk factors
#LawEnforcement #PoliceWeek2022 #PoliceWeek
#ALSAwarenessMonth #SWAT
@jonstewart
. #Nurse living w #ALS for 17 yrs
How has she defied odds?
@NINDSdirector in RFI response, we asked
@NIH to study L/T survivors & #ALSclusters
Flight crews have up to 10x risk
Nurses up to 6x
Why?
#ALSAwarenessMonth #RN
@ALPAPilots @NINDStrials @NIHDirector @ArmyResearchLab
This is the 17th #ALSAwarenessMonth since my diagnosis. I've been medically retired for 15 years (I flew 15 more months after my diagnosis until I was concerned my slurred speech would endanger my patients). I never dreamed I'd live this long with #ALS. #WhatsYourSuperPower?
. #ALS is a thief
You have the power to help:
@NINDSdirector increase research
@DrCaliff_FDA approve drugs that slow the progress
@CDC Fix the broken #ALSregistry
@EPAMichaelRegan work w @CDCDirector & ATSDR to investigate toxins causing #ALSclusters
#ALSAwarenessMonth #EndALS
ALS is a thief. In 18 months it took from me: speaking, singing, my hobbies, my strength, the ability to eat and drink, walking, and driving. Breathing is difficult. I hate this disease. Grateful for those fighting for us and with us. #ENDALS #thisisALS
PCBs, POPs like organochlorine pesticides, flame retardants & other pollutants ⬆️ #ALS risk by 7x
Need transparent #ALS registries that collect #exposome & OMICS/toxicology studies on #ALSclusters
https://t.co/RpioJHoIwA
@CDCDirector @NINDSdirector @EvaFeldmanMDPhD
@LyleOstrow
Many toxins impacting people w #ALS are found in water.
Heavy metals, VOCs, PAHs, etc. Industries are dumping toxins into water & soil, which get into groundwater. Years or decades later, people are getting 100% fatal & paralyzingALS
#ALSclusters #CleanWater
@ErinBrockovich
By 5-4 vote (with Chief Justice Roberts joining the progressives in dissent), #SCOTUS issues shadow docket stay of district court decision that had vacated a Clean Water Act certification rule. Per Kagan, J.: "That renders the Court’s emergency docket not for emergencies at all."
@SecDef @WHCOS @POTUS @FLOTUS Some #Veterans w #ALS wont be here next #Thanksgiving unless we can find out why:
▪️ up to 10x risk for post #GulfWar Vets
▪️ Some #ALSclusters of 400x ⬆️
Need @DeptVetAffairs & DOD to investigate causation
Need Congress to pass #ACTforALS #S1813
@SecDef @WHCOS @POTUS @FLOTUS
@ltgrusselhonore @eventbrite Abandoned oil wells are hypothesized to be associated w 100% fatal #ALS. We've found #ALSclusters near abandoned sites.
@CDCEnvironment & ATSDR don't track clusters on #ALSRegistry but patients dying of ALS are doing it.
Cancer patients have treatments & hope. ALS has none.
Looking forward to watching this hearing!
#Veterans are up to 10x more likely to get #ALS.
Yet, data from @DeptVetAffairs isn't shared between treatment & research arms of VA.
@DeptofDefense is NOT identifying or investigating #ALSclusters.
@MilitaryTimes @TaskandPurpose
Tune in TOMORROW at 3pm ET as Chairman @SenatorTester convenes a Senate Veterans’ Affairs Committee hearing on improving @DeptVetAffairs and @DeptofDefense collaboration for servicemembers and veterans.
Biorepository is critical.
If #ALSRegistry provided value to TODAY'S patients w #ALS, they might be more inclined to participate?
▪Fails to ID #ALSclusters
▪Fails to ID # cases in state & counties
▪Fails women & POC
▪5+ yr reporting delay
@CDCEnvironment @CDCDirector
This year's #ALS Registry Annual Meeting focused on adding new data sources, expanding National ALS Biorepository samples available to researchers, and working with partners to engage patients and caregivers. Learn more: https://t.co/ypP5MrIS4c. #ALSregistry #ATSDR
$120M yet #ALSregistry:
▪ isn't searchable
▪ can't ID # pALS in each state, county & zip code
▪ doesn't synch w @EPA Superfund sites or TRI
▪ misses women, young & POC
▪ fails to ID #ALSclusters
#ALS must be mandatorily reported
@rosadelauro @RepMikeQuigley @SenatorLeahy
The #ALSregistry is sum of VA data + Medicare data. It's a $120M #epidemiological failure that hasn't ID'd any #ALSclusters where causation could be explored to slow this horrific disease despite NIH forecast of 69% ⬆ in #ALS by 2040
@CDCEnvironment @CDCDirector @rosadelauro
For 11 years, the National ALS Registry has provided hope for patients and data for researchers. Every person with #ALS has an individual story. Understanding these stories will help researchers learn more about this disease: https://t.co/4RAbiFhcGF.
#ALSregistry #ATSDR
@EPAMichaelRegan @EPA PFAS suspected association w 100% fatal #ALS.
#ALSclusters aren't ID'd by @CDCEnvironment & ATSDR. Need @EPAresearch, superfund sites & TRI to link to #ALSRegistry that has failed people w #ALS for 10 yrs & $120M
@CDCDirector @EPA @rosadelauro @SenatorCarper @SenatorCardin
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