Top Tweets for #pediatricALS
Today w/ partner Otsuka we announced positive topline results from the Ph3 FUSION study evaluating an investigational RNA-targeted medicine for people w/ amyotrophic lateral sclerosis (#ALS) caused by mutations in the fused in sarcoma (FUS) gene: https://t.co/5FKM4BdUns
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🧬 MELANIN CHILDREN MATTER IS AT THE TABLE.
This week, Melanin Children Matter, Inc. is proud to be in attendance at the Rare Drug Development Symposium, September 9–11, 2026, at Harvard University.
#MelaninChildrenMatter #RareDisease #RareDrugDevelopment #SPTLC2 #PediatricALS
I stood on Capitol Hill with @IAMALS demanding Congress fund research and recognize #PediatricALS. Kids are dying. Families are grieving. Silence is not an option.
Raise the flag. Raise your voice.
#ALSawareness #RareDisease #IAMALS #MelaninChildrenMatter #FlagDay #DCAdvocacy @SenStabenow @SenGaryPeters @SenThomTillis @SenTedBuddNC
@LeaderMcConnell @RandPaul @LindseyGrahamSC @SenatorTimScott
It’s time to act.
Such an honor to receive the MARY-ANN ABESKA SPIRIT AWARD
#IAMALS #MaryAnnAbeskaSpiritAward #MelaninChildrenMatter #PediatricALS #RareDiseaseAdvocate #ALSDoesNotDiscriminate #KingNazirLegacy #BlackMothersLead #FundALS #LegislationMatters
Honored to contribute to the proposal for expanding the ALS Registry to include children under 18. Every voice matters in the fight for better research, resources, and recognition for pediatric ALS. Grateful to be part of this critical step forward! #PediatricALS #ALSRegistryExpansion
No mother should ever be doubted. No mother should ever lose her baby to #ALS and no rare disease in our world dismissed.
When a Mama Bear speaks, we need to listen.
#PediatricALS @ChildrenMelanin #EndALS
Being told my child doesn’t have ALS because it’s rare in kids was beyond painful. Let’s fight for a world where rare diseases aren’t dismissed. #SPTLC2 #PediatricALS #RareDiseaseCommunity #AdvocacyMatters
https://t.co/OcRlCLGtp4
Breaking the Silence on Pediatric ALS
“Did you know that SPTLC2 mutations are linked to #ALS in children? My son’s journey has shown me how misunderstood this disease is in pediatric cases. Let’s break the silence and spread awareness! #PediatricALS #SPTLC2 #RareDisease”
Help us fight for a brighter future! We're on a mission to find a cure for SPTLC2 (pediatric ALS) through research, newborn screening, and early genome sequencing access. 💜 #PediatricALS #SPTLC2 #ALSResearch
ALS doesn’t just affect adults—children can be impacted too. Expanding the ALS Registry to include those under 18 is a crucial step in understanding and combating pediatric ALS. Let’s make a difference together. 💙 #melaninchildrenmatter #ALSAwareness #PediatricALS #JoinTheFight
Helping find a cure to pediatric als can bring us a step closer to ending als. #Fight4KingNazir #pediatricals #ENDALS . A retweet takes a free 5 sec everyone should have the heart and time to retweet.
https://t.co/LfcxMjMo71
Please help me @tylerperry if this comes across your page and let’s get him to notice #FIGHTING4KING #SPTLC2 #PEDIATRICALS
https://t.co/lv63TNJ81K
Mom fighting for her sons life and the lives of others children. #LetThatSinkIn
Look more in depth @ChildrenMelanin
#WoWTribe #WoWitForward #MelaninChildrenMatter #KingNazirOvercomeInVictory #SaveOurChildren
research #PediatricALS #SPTLC2 to understand more.
I was told that even if I do find a nurse (after they train on the same thing I’m already trained in) if she quits they will want they equipment back and he will have to come back to the hospital. 🤔🤔🤔🤔 so I’m guessing I need to buy my own equipment!?!?!?!?
Children.Get.ALS.
Those under age 18 are excluded from the CDC’s National ALS Registry numbers. Unacceptable!!!
@CDCDirector @amyklobuchar @TinaSmithMN @alsassociation @iamalsorg @RareDiseases
#pediatricALS exists
#juvenileALS exists
Like always children are the least of this nation’s concern. WHY not add those under 18 to the register?? ITS NO WONDER KIDS ARE BEING MISDIAGNOSED AND NOT COUNTED. ITS NO WONDER NO KNOWS PEDIATRIC/JUVENILE ALS EXISTS
One min he getting better, talking, sitting up and playing. In a blink of an eye we back here. #PEDIATRICALS #DYINGWAITING @JHSPH_CHS @US_FDA @FDA_Drug_Info @NIH @racing_als @everything_als @POTUS
At 5 years old, King'nazir Gates lives with pediatric/juvenile #ALS.
In his honor, and with a focus on benefitting the childhood rare disease community, @childrenmelanin was created. Read his story below: https://t.co/CQTEZe6HjD
#IAMALS #EndALS #PediatricALS
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