patient advocacy mission

Our highest priority is to meet the needs of patients with commitment and compassion.  We strive to learn from patients, families, caregivers and patient advocacy leaders in order to understand the aspirations and daily challenges each of them face. 

Hannah & Cassidy

Virginia Beach, VA

Sisters living at home.

Erica

Juneau, WI

Researcher at Gene Spotlight Charity

Please reload

Noah

San Francisco, CA

AJ & Aiden

Ocean City, NJ

Jack

Thousand Oaks, CA

Please reload

If I woke one day and I wasn't in pain, I'd probably be dead.

Hannah

14 years old

There is often too much focus on the diagnosis instead of on the person, and helping them to become somebody.

Erica

34 years old

Please reload

Israel

Albuquerque, NM

Christian

Atlantic City, NJ

Luke

Ann Arbor, MI

Miles

Santa Barbara, CA

Please reload

Jay

Ann Arbor, MI

Sammy

Santa Clarita, CA

Please reload

MPS I

HURLER SYNDROME

Noah

Project Alive Episode

AJ & Aiden

On the Playground

Please reload

Israel and Family

Luke

Playing Violin

Please reload

Hannah & Cassidy

Playing with Mom

Please reload

Jay & Luke

ATV in the Backyard

Please reload

training modules