Thank you so much for supporting our campaign!

I'm Lisa Costen, the president and founder of the DYNC1H1 Association, imploring you to give, share, and ask questions about this vital part of our mission for a cure. My daughter Alicia, is 8 years old and affected by a DYNC1H1 variant. She will never walk unassisted because of this devastating disease. She is one of many that have motivated me to found the DYNC1H1 Association to accelerate research towards a cure.

After a year of behind-the-scenes discussions with dozens of researchers, medical professionals, community members, and our scientific advisory board, we know what we need to do. Develop models, and do so yesterday.

The process of finding treatments and cures for any disease require that safety and efficacy are looked at in non-human species first. In an ultra-rare and diverse disease like DYNC1H1 Associated Neurological Disorders, a wide variety of models, in multiple species, and stem cells, are needed. Part of the funding from this project will go toward securing simplified access to existing models for all researchers, while the rest will go towards filling in the gaps between gene variants represented in the models (there are no known mouse models of variants in the 3000-range of the gene, for example).

My daughter Alicia, who thinks it's hilarious that her face is on a mouse, deserves to have the easier life that will only come to fruition with a treatment. Every DYNC1H1 affected person does. This project is a first major step to making treatments into reality.

Together, we have the power to find a cure for DYNC1H1 Associated Neurological Disorders!

Thank you!

Let's Make some Models!

Of DYNC1H1 variant affected mice, worms, flies, and more! For SCIENCE!!

Team Members