CureSHANK is a nonprofit organization dedicated to accelerating the development of life-changing treatments for Phelan-McDermid syndrome (PMS), a rare genetic disorder most often caused by a deletion or mutation of the SHANK3 gene. PMS can profoundly affect a person’s ability to speak, learn, sleep, and live independently, and many individuals also experience autism, seizures, and other significant medical challenges.
Founded by families who refused to accept that “no treatment exists” should mean “no treatment is possible,” CureSHANK brings together families, scientists, clinicians, and industry partners to drive promising research toward effective therapies. Our mission is urgent: to fund and accelerate the science that can improve the lives of people with PMS and ultimately lead to meaningful treatments. Every mile run and every dollar raised through the 2027 Los Angeles Marathon brings us one step closer to that goal.