You're Generosity Is Creating Real Change
The Miraculous Miss Maddie Her Story
In January 2020, Laura and Patrick Sargent learned that their daughter Maddie — a bright, determined little girl with a twin sister and older brother — had Angelman syndrome, a rare neurogenetic disorder that affects development in profound ways, touching everything from movement and speech to sleep and seizures.
What followed was a crash course in what it actually means to fight for your child's care. Finding specialists meant traveling out of state. Getting the right equipment meant battling insurance for months. The learning curve was steep, the barriers were relentless, and the emotional weight of it all never let up.
They weren't alone. As they connected with other Angelman families in Kansas City, the same story kept surfacing — children who weren't getting the care they needed, parents hitting walls that shouldn't exist. In 2022, they founded Maddie's Mission on a simple belief: no family should have to fight this hard just to access the care their child deserves.
The Miraculous Miss Maddie How We Make a Difference
Every family navigating a rare neurological diagnosis deserves access to the care, resources, and support that can change the course of their loved one's life. We work to make that possible.
- Daily Life & Direct Support — We fund the adaptive devices, equipment, and therapies that families need to help their children live fully and safely today.
- Education & Family Empowerment — We support families in becoming strong, informed advocates, funding conference scholarships, system navigation support, and family-led initiatives.
- Healthcare Innovation & Hope — We invest in the clinical care and research that expands what's possible, from early diagnosis through adulthood.
Join Us
International Angelman Day
The ASF is one of 50 organizations, world-wide that will came together to raise awareness for Angelman syndrome and honor our loved ones with AS.
February is International Rare Disease month and this annual event is observed for Angelman syndrome. Join us to encourage fundraising, promote research and educational resources, and remember those people with Angelman Syndrome who are no longer with us.
