Overview
Juvenile amyotrophic lateral sclerosis (also called juvenile ALS or JALS) is a very rare form of motor neuron disease that begins before the age of 25. Like adult ALS, it affects the nerve cells (motor neurons) in the brain and spinal cord that control voluntary muscle movement. However, juvenile ALS tends to progress more slowly than the adult form. The disease causes gradual muscle weakness, stiffness (spasticity), and wasting (atrophy) in the arms, legs, and sometimes the muscles used for speaking, swallowing, and breathing. Patients may first notice difficulty walking, clumsiness, or weakness in a hand or foot during childhood or adolescence. Unlike typical adult-onset ALS, juvenile ALS is more often caused by inherited genetic mutations rather than occurring sporadically. Several genes have been linked to this condition, and the pattern of inheritance can vary depending on the specific gene involved. The disease course is generally slower than adult ALS, and some patients survive for decades after diagnosis, though disability can be significant over time. There is currently no cure for juvenile ALS. Treatment focuses on managing symptoms and maintaining quality of life. This includes physical therapy, occupational therapy, speech therapy, assistive devices, and medications to manage spasticity and other symptoms. Research into disease-modifying therapies is ongoing, and genetic discoveries are opening new avenues for potential targeted treatments.
Also known as:
Key symptoms:
Progressive muscle weakness in arms and legsMuscle stiffness and spasticityMuscle wasting and thinningDifficulty walking or frequent trippingClumsiness and poor coordinationSlurred or slow speechDifficulty swallowingMuscle twitching or crampingLoss of fine motor skills such as writing or buttoning clothesBreathing difficulties in advanced stagesAbnormal reflexesFoot drop or abnormal gaitFatigue
Clinical phenotype terms (46)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Juvenile amyotrophic lateral sclerosis.
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Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Juvenile amyotrophic lateral sclerosis.
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Caregiver Resources
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Family & Caregiver Grants
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.What specific genetic mutation is causing my child's juvenile ALS, and what does that mean for how the disease may progress?,Are there any clinical trials or experimental treatments available for this specific genetic form of juvenile ALS?,What therapies and interventions should we start now to maintain function as long as possible?,How often should we have follow-up appointments, and what should we be monitoring at home?,Should other family members be tested for the genetic mutation?,What school accommodations should we request, and can you provide documentation?,When should we consider respiratory support or other advanced interventions?
Common questions about Juvenile amyotrophic lateral sclerosis
What is Juvenile amyotrophic lateral sclerosis?
Juvenile amyotrophic lateral sclerosis (also called juvenile ALS or JALS) is a very rare form of motor neuron disease that begins before the age of 25. Like adult ALS, it affects the nerve cells (motor neurons) in the brain and spinal cord that control voluntary muscle movement. However, juvenile ALS tends to progress more slowly than the adult form. The disease causes gradual muscle weakness, stiffness (spasticity), and wasting (atrophy) in the arms, legs, and sometimes the muscles used for speaking, swallowing, and breathing. Patients may first notice difficulty walking, clumsiness, or weakn
Which specialists treat Juvenile amyotrophic lateral sclerosis?
1 specialists and care centers treating Juvenile amyotrophic lateral sclerosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.