Top Tweets for #geneticALS
It's Official - MGH in Boston has joined the ranks of those embracing at risk care. We cheer them and all our recognized at risk care centers! See more at https://t.co/bGADJDQP4E #Atrisk #geneticals #c9rof72 #sod1
Congratulations Dr. Soto Albrecht!
See more here: https://t.co/dGPmdzzbwi
#EndtheLegacy #c9orf72 #research #geneticALS
Check out this latest episode which just dropped! Thank you, Brandy Schantz of Living Chronic for a great interview.
#GeneticALS
#ALSmemoir
@End_The_Legacy
@ALSTDI
@LesTurnerALS
@iamalsorg
@everything_als
In 2025, we are resolute in our commitment to ensuring the guidance published last year is shared with all those at risk! What's your resolution?
See more about the guidance here: https://t.co/hdiRimlx1e
#EndTheLegacy #GeneticALS #GeneticFTD #Care
Hotel and food are covered for all registered attendees who are impacted by genetic or inherited ALS and FTD. A nominal $75 registration fee is required. Travel subsidies are available. https://t.co/Xc8PweTzDY #EndTheLegacy #c9orf72 #sod1 #grn #geneticALS #geneticMND #geneticFTD
Lillian had 9 children, was a college graduate, and worked in accounting. This photo is a soon before she passed at home in New Rochelle, NY. Share your memories of your grandparent's impacted by ALS or FTD below! #grandparentsday #als #ftd #c9orf72 #geneticALS #EndTheLegacy
Miigwech Jean & @End_The_Legacy for not excepting & speaking out against this ongoing behaviour in our #ALSCommunity There those among us that have included community, specialist, researchers that cause incredible harm by denying & discriminating against the #GeneticALS community
This is the most shocking of all statements with a clearly developed world view that is horrifying. This was said in public. We think this has no place in the discourse on these diseases. We are the only group calling these calumnus statements out, but we welcome all to join us.
This #ALSAwarenessMonth we are sharing information on #GeneticALS and #GeneticFTD and the people impacted by #c9orf72, #SOD1, #GRN, #TARDPB, #FUS and others and how we serve their needs and interests. Today we are highlighting our pillar of providing Support services.
And a sincere grateful acknowledgment to our event partners, the @ALSHF and @NEALSConsortium and especially our local host and co-facilitator, the @LesTurnerALS and their amazing staff.
#ALS #FTD #C9ORF72 #SOD1 #GRN #TARDPB #GeneticALS #GeneticFTD #EndTheLegacy
follow the same progression, decades of muscle weakness, no #FTD & then bulbar.Even with extreme weight loss, loss of speech etc most still retain some mobility throughout. #ALSAwareness for #Doctors that dismiss our #ALS & researchers that can learn a lot about #GeneticALS
We are grateful having Daniel on our team! #c9orf72 #geneticals #geneticftd #wecareaboutftd #FTDadvocate #ftdawarenessweek #EndFTD #endthelegacy
We gave it our all as the voice of the #geneticals #sod1 community delivering testimony to dozens of FDA staffers in a Jan 12 patient listening session , coordinating many patient speakers at the #tofersen Adcom, and providing clear rationale for NFL as endpoint. Now we wait.
Predicting Clinical Needs and Potential for #GeneticTherapies in #ALS : Jennifer Morganroth, MD, MBA $biib $ions #Tofersen #geneticALS #neurology #raredisease https://t.co/xl5QlOnMtF
Back at OSU today!
Good morning everyone!
#nowhiteflags #nottodayals
#Godsgotthis #teamjacobwv #ALS #ion363 #Jacifusen #ALSawareness #Joshualv9 #isaiah4031 #teamgleason #ButGod
Miller adds that "the published data and the anecdotal stories, some of which I shared with you, tofersen has a major impact on disease progression and is clearly a game changer." $BIIB
Individuals with genetic amyotrophic lateral sclerosis (ALS) are profoundly impacted by this neurodegenerative disease.
Our dedication to developing therapeutics for #GeneticALS is inspired by people like Jeremy, who fearlessly battle ALS and strive to spread awareness.
@kelsieswrites @Biohazard3737 @ChrisSnowCGY @US_FDA That just doesnโt show up in natural history studies. 1.4 year median. Only 2 out of 100+ made it to 3 years. #TofersenWorks #geneticALS @FDACDERDirector
The struggle for the dignity of the #geneticals/ftd and #c9orf72 communities knows no borders. I would be so grateful if any could connect me w/ a French/English interpreter for a 1 hour video meet tue 9am pst to help a French C9 carrier and I meet (will pay!)
@RealSportsHBO @NHLFlames @hbomax Chris is truly inspiring. #GeneticALS #ApproveTofersen #LouGehrig #neurology #FDA #RealSports $biib $ions
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