Our Community Needs Your Help

Read about the personal stories and struggles of ID and KS families and kids. As funding remains the biggest hurdle in developing a potential  drug treatment, consider a donation that could make a big difference in helping these kids live a normal life. Donate

Nikhil Verma
Nikhil VermaCanada

Nikhil was born a little earlier than expected and was a seemingly healthy and responsive newborn baby. After missing many milestones […]

Natalya Klump
Natalya KlumpChina

When Natalya was just eight months old, a neurologist looked us squarely in the eyes and said without hesitation, “We don’t yet […]

Ethan McIntosh
Ethan McIntoshUSA

Initially we thought that the extent of our little boy’s problems were limited to moderate to severe hearing loss, but that only marked […]