Pediatric & Juvenile ALS Awareness

Dedicated to spreading awareness of pediatric and juvenile Amyotrophic Lateral Sclerosis.
Children get ALS, too.

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

Amazing news! Real hope for #FUSALS which is the #1 cause of #pediatricALS and #juvenileALS

[Ionis @ionispharma]

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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[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

@ionispharma Amazing news for FUS patients & families! Hoping for accelerated FDA approval. 🙏🏻

[Ionis @ionispharma]

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

$IONS

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

#ALSawarenessMonth
#ChildrenGetALStoo
#PediatricJuvenileALS

https://t.co/Vtrk644clV

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

Amazing hope for those with FUS mutations, the leading cause of #pediatricALS and #juvenileALS
🙌🏻💙

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

Experimental drug ‘Ulefnersen’ offers unprecedented hope for rare form of ALS https://t.co/NZbqWkOxg7

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

Awareness matters!
@NIH @CDCgov @iamalsorg
@Child_Neurology
#juvenileALS
#pediatric ALS

[ALS News Today @alsnewstoday]

Juvenile ALS is extremely rare, affecting fewer than 1,000 people in the U.S. Read more about it: https://t.co/dedAz7ugUA

#ALS #AmyotrophicLateralSclerosis #ALSCommunity #LivingWithALS #ALSAwareness

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

May is #ALSAwareness month.
#pediatricALS
#juvenileALS
Children and young adults get ALS, too.

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

The many beautiful faces of courageous FUS-ALS warriors! 💙👍🏻
#pediatricALS #juvenileALS

[TeamJacobWV @TeamJacobWV]

Standing ovations for the “Dr Lalji” award recipient - for the development of #Jacifusen (#ION363), a gene therapy for FUS-ALS - Dr. Neil Shneider!
These are the faces of FUS ALS.
Some of these beautiful heroes have left us, but thanks to their courage, many others still fight!

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

@CDCEnvironment Why doesn’t the #ALSregistry track ALS in people under the age of 18?
In addition to juvenile ALS #jALS, pediatric ALS #pALS also occurs. Accurate data & representation of this disease matters! Please amend registry to include those under 18 too!
@iamalsorg @alsassociation

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

#pediatricALS
#juvenileALS
#ALSAwarenessMonth

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

@TargetALS_fdn Thank you for bringing awareness to juvenile ALS! Didn’t see this mentioned in your blog post & want folks to be aware there is currently a clinical trial for FUS mutations (the #1 cause of pediatric & juvenile ALS). https://t.co/PnIRPwOUYc

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

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

[Melanin Children Matter @ChildrenMelanin]

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

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

Hope for #FUS-ALS 🙌🏻

[n-Lorem Foundation @n_lorem]

New episode LIVE! This week, Stan interviews Sonja and Dr. Neil Shneider of @ColumbiaPS as they discuss Anna’s story – a girl fighting a fatal form of ALS.
Stream here: https://t.co/4Y43FKjyJ9
#nlorem #ALS #treatment #columbiaMed #podcast

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

New Initiative to Develop Personalized Therapies for People with Rare Genetic Forms of ALS https://t.co/SxnNuF1EqI

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

The inspirational story behind a novel ASO therapy for FUS-ALS.
#juvenileALS
#pediatricALS
https://t.co/1rt0fIGTE7

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

https://t.co/0sKpR2a0BZ
#ALSAwarenessMonth
#pediatricALS
#ChildrenGetALS
#EndALS💙👍🏻

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

#ALSAwarenessMonth
#pediatricALS
#juvenileALS
#ENDALS

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

FUS mutations are the leading cause of #pediatricALS and #juvenileALS.
Clinical trial is currently recruiting FUS patients.
Learn more here.
https://t.co/DVFezmPkYf
#curepediatricandjuvenileALS 👍

[Pediatric & Juvenile ALS Awareness @ChildrenGetALS]

Tangible hope for those diagnosed with FUS-ALS!🙌 FUS-ALS mutations are the #1 cause of pediatric & juvenile ALS.

[Neurology Today @NeurologyToday]

Via @NatureMedicine: A study by @NeilShneider et al reported that an antisense oligonucleotide reduced a toxic protein in an #ALS patient with the FUS mutation. The promising results have paved the way for a clinical trial with multiple patients. https://t.co/OOBW9hLrUd