Autism, Epilepsy, Hypotonia, Leukemia
Not the diagnosis, just the symptoms
Shine a light on rare genetic diseases like Ring 14 lost in the shadow of more common conditions. Your donation can help bridge the gap.
Our Mission
We are parents dedicated to spearheading research, education, and raising awareness for rare life-threatening genetic disorders such as Ring 14 Chromosome Syndrome.
OUR STORY
About 200 people out of 8,100,000,000 have Ring 14
We're just a mom and a dad with the rarest of daughters. She started having seizures at two and half months which developed into severe Epilepsy lasting 48 hours. This diagnosis was actually only a symptom of one of the rarest chromosome syndromes on earth. The syndrome affecting our child is not just rare; it's so unique that it places us in an isolating and challenging situation where traditional medical support and research are limited. We must search across the country just to find proper care. This lack of information and limited support has propelled us to take an active role in understanding the genetic nuances of the condition. We can't stand back and wait when our baby is missing genes that protect you and I from the most insidious afflictions. Our aim is to further bridge the gap between rare genetic disorders, the scientific community, and the families they affect by leveraging education in genetics to spearhead research initiatives and collaborate with genetic experts globally. We're not the first, but we hope to be the last.
Current Projects
Research
We are actively funding research and education projects to better understand and find treatments for rare genetic disorders.
MS in Human Genetics and Genomics
Certificates in Advanced Genetic Concepts
CRISPR
Genetic Engineering
Gene Therapy
LLM Training in Genetic Anomalies
Awareness
Check back soon for stories from families affected by rare diseases. We are also aiming to start organizing events in the Northern California region and in North Carolina. Subscribe to learn more.
