SMOC1 Research Needs You! SMOC1 Foundation for Hope

Shortly before her second birthday, Hope was diagnosed as having a SMOC1 Related Disorder. This made her pretty unique as one of less than 10 known cases. In her 6 short years of life, she has had 9 hospitalizations and 4 surgeries. She receives medical care in 2 different states. Hope was born very small with one eye, one functioning kidney, dislocated elbows, a large hole in her heart, curved fingers, 8 beautiful toes, and a tethered spinal cord.

SMOC1 Related disorders are ultra rare! Hope’s family was left with almost no resources to find help or hope for the progression of this disease. Thus, SMOC1 Foundation for Hope was born. The goal of our organization is to provide a home for families affected by SMOC1 Related Disorders, to give these families a roadmap while navigating this disease, and to push SMOC1 research forward with the end goal of improving the quality of life for patients with SMOC1 Related Disorders.

We need your help! Research requires funding and our research goals for 2025 are exciting and your donation is tax deductible!

These include building animal research models and a patient registry. Please consider giving to improve the lives of children who are affected by SMOC1!

Thank you to gofundme for providing a reduced fee for us!

instead of only doctors. We found other parents who got news similar to ours and learned their kids were unicorns. We took inspiration and created SMOC1 Foundation for Hope.

Our goal is twofold. One: create a community for SMOC1 families and become a place people could turn for answers and some direction. Two: push the research spaces forward in regards to SMOC1. We want to help bring the research community together to create a clearer picture of what SMOC1 dysfunction looks like in the body and help to draw that roadmap we don't have now.