The Grace Principle
How Rare Disease Families Need to Start Rethinking How Cures Get Built For a long time, rare disease advocacy has followed a simple instinct: focus on your own disease, fund your own research, hope your cure comes next. It’s understandable. When it’s your child, your diagnosis, your future on the line, narrowing the focus feels…
We Are Not Distant
The Unfiltered Truth About Our Life With Grace I don’t think anyone really understands what our life is like. Not family. Not friends. Not doctors. Not even other parents unless they live this exact version of it. People see a little girl who walks, who talks, who smiles. They hear “cerebral palsy” or “developmental delay”…
Talk to Your Physical Therapist – Why SPG4 Needs Focused PT
When it comes to treating spasticity in SPG4, it’s not just about any physical therapy. It’s about a highly specific approach that focuses on opposing muscle groups and maintaining muscle length. Why Specificity and Muscle Length Matter SPG4 often leads to muscle imbalances that cause certain muscles to become overly tight while their opposing muscles…
SPG 4 Denovo 