Results
Special Needs > Cystic Fibrosis
Exploring the Advancements in Cystic Fibrosis Treatments
...Cystic Fibrosis. Cystic fibrosis is a genetic disorder. It affects the lungs and...without CF. Doctors can also do a genetic test to look for changes in the CFTR...early. To learn more about newborn screening for CF, go to https://www.cff.org/What-is-CF/Testing/Newborn-Screening-for-CF/....https://www.cff.org/What-is-CF/Testing/Newborn-Screening-for-CF/. Treating Cystic Fibrosis....
Research > Genetics
CRISPR Gene Therapy for Rare Pediatric Disorders: What Families Need to Know
...treatment was designed specifically for that child's genetic mutation, built from scratch as a one-time intervention...gene on or off. When it works, it addresses the genetic cause of a disease rather than managing symptoms....every rare disorder. It's most effective when the genetic...
Research > Genetics
Chromosomal Microarray vs. Whole Genome Sequencing: Which Genetic Test Is Right for Your Child?
Your child's neurologist just recommended genetic testing. The referral says "chromosomal microarray"...microarray" but when you called to schedule, the genetic counselor asked if you'd considered whole genome...DNA) that cause disease. If your child has a rare genetic condition caused by one broken gene, WES is more...
Research > Funding
Private Foundations Funding Disability Research: A Guide for Advocates and Families
...investigators. That's not supplemental support. That's critical infrastructure. For families navigating cerebral palsy, fragile X syndrome, or rare genetic conditions, the funding picture looks different. NIH cerebral palsy research averaged $22.7 million annually from 2014 to 2023. Only 2.3% of that went...
Research > Brain Science
Neuroplasticity Across Disabilities: The Science of Brain Change in Children with Cerebral Palsy, Down Syndrome, and Stroke
...thing across all of them. Can a brain damaged by oxygen deprivation at birth rewire the same way a brain does after a stroke at age four? Does the genetic change in Down syndrome create a different kind of plasticity? The short answer: the core principles are the same. Repetition, intensity, and timing...
Special Needs > Muscular Dystrophy
Muscular Dystrophy in 2026: What Families Need to Know About Gene Therapy and Daily Life
...ambulatory. That means more families now have access, but the eligibility window is still tight. Your child may qualify if: He has a confirmed DMD genetic mutation...
Special Needs > Rare Disorders
Ending the Diagnostic Odyssey: How Whole Genome Sequencing Is Changing Rare Disease Diagnosis
...billion base pairs of your child's DNA. It catches genetic variants that targeted gene panels and exome sequencing...inversions. It identifies variants associated with known genetic conditions and flags variants of uncertain significance...flags variants of uncertain significance (VUS), genetic changes whose clinical impact isn't yet understood....
Research > Genetics
Understanding Genetic Testing for Autism, Cerebral Palsy, and Developmental Disabilities: A Parent's Guide
...mentions genetic testing....anything. Genetic testing after...underlying genetic cause that...each type of genetic test can...recommended. Why Genetic Testing Matters...root cause. Genetic testing looks...Finding a genetic cause can...specific genetic diagnosis...with certain genetic conditions....And if a genetic variant is...screened. But genetic testing doesn't...cause. A genetic variant is...
Parenting > Diagnosis
Genetic Testing for Developmental Delays: What the New AAP Guidelines Mean for Your Family
...recommending genetic testing" and...its guidance on genetic testing for children...preparation. Here's what genetic testing means,...recommends it. What Genetic Testing Is (and...(and Isn't). Genetic testing looks...that match known genetic conditions. About...disability have a genetic cause. That doesn't...child grows. Genetic testing doesn't...whether there's a genetic explanation for...
News > Lifestyle
How to Find Your Disability Community: Online Groups, Local Organizations, and Peer Support
...ask a question at 2 AM and have three responses by breakfast. Geography doesn't matter. If you're the only family in your town dealing with a rare genetic condition, online community may be your primary connection to people who understand. Large general disability forums: r/disability on Reddit: active...
Medical > Cardiology
Managing Your Child's Heart Health with Muscular Dystrophy: A Parent's Guide to Cardiomyopathy Monitoring
...the muscle scars and stiffens. The heart enlarges to compensate, but eventually it can't pump efficiently. In DMD, this process is inevitable. The genetic mutation eliminates functional dystrophin entirely. In Becker muscular dystrophy, some dystrophin is produced, so cardiac disease progresses more slowly...
Assistive Tech > Mobility
Tariffs Are Raising the Cost of Wheelchairs, AAC Devices, and Medications — What Families Can Do
...are manufactured abroad. Even software-only solutions run on hardware subject to tariffs. Pharmaceutical products: Specialty medications for rare genetic conditions, seizure disorders, metabolic diseases. Many rely on imported active ingredients or are manufactured entirely outside the US. Proposed tariffs...