Results
News > Advocacy
Special Needs In Our Homes: A National Discussion That Must Continue
...birthmother chose to hide her prenatal abuse to find the best family for her baby....harm she caused to the baby by her drug and alcohol abuse, no less her own...to the baby by her drug and alcohol abuse, no less her own psychological problems....when she didn't tell us about that abuse. We never knew what we didn't know...
Health > Mental Health
New Mental Health Manual Could Be “Dangerous”
...development and rethought. The new DSM could also give serial rapists and sex abusers labels like "paraphilic coercive disorder," which is troublesome as it...difficult to avoid the conclusion that DSM-5 will help the interests of the drug companies. “Madness and misery exist, but they come in many shapes and sizes,”...
Special Needs > Epilepsy
A New Epilepsy Treatment Reports Over 90% Seizure Reduction in Initial Patients
For families managing drug-resistant epilepsy, the standard list of options is a familiar and often...regulate electrical activity. When the inhibitory signals are disrupted or absent in certain regions, seizures can propagate. NRTX-1001 is designed to restore...
Career > Finding Jobs
Work Incentives Planning and Assistance: Benefits Counseling Before Returning to Work
...people who receive SSI or SSDI, that question isn't hypothetical worry. Your monthly cash benefit, your Medicaid or Medicare coverage, your prescription drug access: all of it runs through formulas that change when you earn wages. Get the calculation wrong and you can lose coverage you depend on, sometimes...
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.
The U.S. Food and Drug Administration granted Regenerative Medicine Advanced Therapy (RMAT) designation to GS-100 on April 14, 2026, an investigational gene therapy developed...
Research > Drug Development
Should Your Child Participate in a Clinical Trial? A Parent's Decision Framework
...don't fully understand, for a drug that may or may not work, with...side effects, and whether the drug is tolerated. This is the highest-risk...the highest-risk phase. The drug may not work at all; safety...looking for a signal that the drug does what it's supposed to do....3,000 participants or more. The drug has shown promise in earlier...
Research > Drug Development
Fragile X Drug Trials: The First Real Breakthroughs and What They Mean for Families
If you've been following Fragile X drug research for any length of time, you've probably learned to hold good news...it carefully rather than cautiously. In 2024, Zatolmilast became the first drug to produce unequivocally positive results in a Phase 2 trial for Fragile...
Special Needs > Epilepsy
Dietary Therapy for Epilepsy: A Parent's Guide to Ketogenic and Modified Atkins Diets
...to know what the evidence shows. The ketogenic diet isn't alternative medicine. It's an evidence-based neurological intervention that's been used for drug-resistant epilepsy since the 1920s. About 20 to 30 percent of children with epilepsy don't respond adequately to medications. For many of these families,...
Research > Drug Development
The Drug Development Pipeline for Special Needs: What Parents Need to Know About How Treatments Go from Lab to FDA Approval
...headline about a promising autism drug entering Phase 2 trials, and...market. Understanding where a drug sits in the development pipeline...specific question about whether a drug is safe enough and effective...Human Testing Begins. Before a drug is tested in people, it goes...file an Investigational New Drug (IND) application, which is...
Health > Treatment
Managing Multiple Medications for Children with Medical Complexity: A Parent's Safety Guide
...question no one else is tracking: do all of these still make sense together? Children with medical complexity face a five times higher risk of adverse drug events than children on single medications. Over 30% of medication errors happen at home, not in hospitals. The system assumes someone is watching the...
Health > Alternative Medicine
CBD for Children with Special Needs: Separating Marketing from Medicine
...between FDA-approved CBD and the CBD products you see in stores or online. The FDA has approved exactly one CBD medication: Epidiolex, a prescription drug used to treat seizures in Dravet syndrome and Lennox-Gastaut syndrome, two rare forms of epilepsy. Epidiolex is pharmaceutical-grade, meaning every...
Research > Funding
Investing in the Future of Special Needs Research and Innovation
...translates into better ways to diagnose, treat, and manage these conditions. Breakthroughs in genetics, neuroscience, and other fields have led to targeted drug therapies and interventions for conditions like fragile X syndrome, Down syndrome, and autism spectrum disorder. More research...