May 1, 2024

The IEP process can be overwhelming and intimidating. In this session, Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, provides a Crash Course on how to prepare, what to consider, and what to expect in the IEP process.

October 14, 2023

Dr. Erika Holzbaur about the important role that DYNC1H1-encoded proteins called Dynein play in brain cells. Dynein dysfunction is a cause of the variety of symptoms that show up in those who have DYNC1H1- Associated Neurological Disorders.

Dr. Erika Holzbaur is a professor at the at the University of Pennsylvania and a member of our Scientific Advisory Board

August 16, 2023

Erica Jones from Simons Searchlight talks with our CFO, Brettne, to walk through signing up for Simons Searchlight and answer all of your questions!

Sept. 14, 2023

Join us in a talk with Rozalia Valentine, MS, CGC. Rozalia is an expert in pediatric neurogenetics, Rozalia works with the families of children with neurological disorders to help find genetic etiologies.

Note: The recording was lost due to technical issues. Rozalia will be recording it for us to post at a later date.

August 9, 2023

Meet our executive leadership team and our scientific advisory board, learn about our mission, and find out how you can get involved!