Morgan DeSantis, Ph.D. is an Assistant Professor of Molecular and Cellular Developmental Biology at University of Michigan. She is an integral part of the DYNC1H1 Association Scientific Advisory Board.

Dr. DeSantis studies dynein, the motor protein made from the DYNC1H1 gene. During this presentation, she will share from a basic biology perspective what is DYNC1H1 and how variants cause DYNC1H1-Related Disorders. She will also share about current research in her lab on DYNC1H1 and how you can be more involved in research to help us find safe treatments for our community.

Register here to attend: https://zoom.us/meeting/register/_GpkXD0ORVijEBPYHQ8FJA

Join us for a Zoom Community event focused on speech and AAC. Rachel will share some insights from her training as a speech language pathologist, and as a mom of a son with DYNC1H1. She will give a brief presentation and then answer questions and guide the discussion.

Rachel Beck, MS, CCC-SLP, is a licensed speech pathologist. You can read more about her story with her son, John Davis, here: https://www.dync1h1.org/stories/john-davis-diagnostic-journey

This event will be similar to the Community Chats, with a focus on speech as the topic. In order to allow community members to share openly, we will not be recording this event. We plan on doing additional events like this on a variety of topics and will work to vary the time so that others will be able to attend. We know time zones and schedules can be difficult!

Register for event: https://zoom.us/meeting/register/T2QThBSqQvaFELRJwYgb_A

Join us for our First Annual Taking Steps Toward Treatment Virtual Walk on Saturday, May 31, 2025. Gather together in person or virtually with your family and friends to raise money to fund research on DYNC1H1-Related Disorders and help us find a safe, effective treatments. 

Register and join here: https://givebutter.com/dync1h1walk

Cerebral/Cortical Visual Impairment (CVI) is the leading cause of childhood blindness and low vision. Come learn all about CVI, resources available, things to ask your doctor about, and ask your own questions!

Register here: https://zoom.us/meeting/register/uSTUKpiJTFaY5pvYsfxWrg

Come join our virtual community chat to meet other DYNC1H1 caregivers and patients to connect, share experiences, receive support, ask questions, and more. Make sure to register to receive the Zoom link: https://zoom.us/meeting/register/tJMpceytpjMqGNWzP8BwcvYwmraKguOPfVP9

Come join our virtual community chat to meet other DYNC1H1 caregivers and patients to connect, share experiences, receive support, ask questions, and more. Make sure to register to receive the Zoom link.

DYNC1H1 Association, in association with DEE-P Connections, is excited to welcome Advocacy Abby, who will assist families with medically complex children in navigating the complexities of grants and other funding sources.

Register here!

Dr. Hormos Dafsari is one of the leading researchers and clinicians of DYNC1H1-Associated Neurological Disorders. He will be providing a brief research update, sharing his plans for upcoming research opportunities, and answering questions from the community. Please join us!

Register here to join

Come join our virtual community chat to meet other DYNC1H1 caregivers and patients to connect, share experiences, receive support, ask questions, and more. Make sure to register to receive the Zoom link.

Come join our virtual community chat to meet other DYNC1H1 caregivers and patients to connect, share experiences, receive support, ask questions, and more. Make sure to register to receive the Zoom link. Times in Eastern Standard Time.

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.

Join us for a discussion on the role of microtubule dysfunction on causing and the potential for treating motor protein diseases.

Register here: https://zoom.us/meeting/register/tJckd-CqrT4tEtFUOCrAhRW4RSJ4LiQPrJvq

Join us for a informal Zoom meeting where we can connect with one another. It will be an hour to meet each other, share and relate about our struggles, successes, and check-in on how we're feeling about upcoming holidays.

Register to receive a Zoom link: https://docs.google.com/forms/d/e/1FAIpQLSf-h5j_AIKTPINhcBoj18U-FfVzHY18AqBXLiMkNwIEhkq1jg/viewform?usp=sf_link

Join us for a presentation by a neurology genetic counselor and a Q&A session to follow.

Find out why and how to support our community by registering and completing a profile on Simon’s Searchlight!

Let’s get it started! We have a plan, we have a team, and now we need YOU! Join us to find out how you can help us get treatments that are effective for the DYNC1H1 community!