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Special Needs > Multiple Sclerosis
Living with Pediatric MS: A Complete Guide for Families
...sclerosis, the road ahead can feel overwhelming. Pediatric MS is rare (roughly 3–5% of all MS cases begin...first few months after diagnosis. Understanding Pediatric MS. Multiple sclerosis is an autoimmune disease...Understanding Pediatric MS. Multiple sclerosis is an autoimmune disease where the immune system attacks myelin,...
Assistive Tech > Mobility
Mobility Equipment Maintenance: Keeping Wheelchairs and Walkers Safe
Routine maintenance checklist for pediatric wheelchairs, gait trainers, and walkers to prevent breakdowns and ensure safety.
Assistive Tech > Mobility
Trexo Robotic Gait Trainer: What Families Should Know About the Technology
...realistically costs to access. What the Trexo Robotic Gait Trainer Is. Trexo is a pediatric robotic gait trainer designed for home and clinical use. It supports children...children with cerebral palsy, spina bifida, muscular dystrophy, and other conditions that affect mobility. How Robotic Gait Training Works. Walking involves...
Assistive Tech > Mobility
Adaptive Strollers vs. Wheelchairs: Which Mobility Device Does Your Child Need?
Your pediatric therapist just suggested it's time to transition from your child's adaptive stroller to a wheelchair. Your child is four years old, still working...
News > Research
The FDA Just Gave a Rare Pediatric Gene Therapy Its Fastest Regulatory Track. Here's What Families of Children with NGLY1 Deficiency Need to Know.
...regulatory pathway. NGLY1 Deficiency is a serious, life-threatening genetic condition with no approved treatment. Approximately 100 individuals worldwide have...treatment. Approximately 100 individuals worldwide have been diagnosed with the condition, though the calculated U.S. incidence suggests around 12 children are born...
Assistive Tech > Mobility
When to Replace Your Child's Wheelchair: Fit Indicators and Insurance Timeline
...six months ago now leave your child's feet dangling. These signs indicate safety issues and confirm that your child has outgrown their wheelchair. Pediatric wheelchairs have a limited lifespan not because they wear out, but because children grow. Unlike adult wheelchairs expected to last five years or...
Special Needs > Multiple Sclerosis
Managing MS Fatigue in Children: What Parents and Schools Need to Know
...no amount of rest seems to fix. You know it's the MS. The school thinks it's behavior. MS fatigue is the most common and most disabling symptom in pediatric multiple sclerosis, but it's invisible. Teachers see a child who looks fine and assume the exhaustion is laziness or lack of effort. Parents see a...
Special Needs > Multiple Sclerosis
School Accommodations for Children with Multiple Sclerosis
...who has never worked with pediatric MS, they can look like inattention,...educators have never encountered pediatric MS. The condition affects...encountered pediatric MS. The condition affects roughly 3 to 5 percent...the most common symptom in pediatric MS, affecting up to 80 percent...percent of children with the condition. It's not tiredness that resolves...
Special Needs > Cystic Fibrosis
The CF Transition to Adult Care: How to Prepare Your Teen for Independent Health Management
...has been coordinated by the same pediatric team for years. Somewhere between...When the Transition Happens. Most pediatric CF centers transition patients between...developmentally ready. Others extend pediatric care to 21 if the adult clinic has...team. What Changes in Adult CF Care. Pediatric CF care is family-centered. Parents...
Research > Genetics
CRISPR Gene Therapy for Rare Pediatric Disorders: What Families Need to Know
...clinical trial. For families navigating rare pediatric diagnoses, that news raises the question everyone...major children's hospitals, will determine which conditions move from "in development" to "available" over...it powerful for rare disorders. Many of these conditions are caused by a single mutation in a known gene....
Research > Funding
Private Foundations Funding Disability Research: A Guide for Advocates and Families
...cerebral palsy, fragile X syndrome, or rare genetic conditions, the funding picture looks different. NIH cerebral...research. The rest focused on early intervention and pediatric care. Private foundations working in these spaces...foundation funding in disability research splits into condition-specific players and broad-scope innovators....
Research > Brain Science
Neuroplasticity Across Disabilities: The Science of Brain Change in Children with Cerebral Palsy, Down Syndrome, and Stroke
...hearing it in three different contexts (cerebral palsy, Down syndrome, pediatric stroke) and you're wondering if it means the same thing across all of...principles are the same. Repetition, intensity, and timing work across conditions. But how those principles show up in your child's life, and what you can...