Upcoming events.
Check out our past events page to watch recordings of events we’ve hosted!
DRD Through the Lifespan - Panel Community Chat
Join the DYNC1H1 Association in hosting a panel discussion on DYNC1H1-Related Disorders (DRD) through the lifespan. Our three panelists either have adult children with DRD, or are patients raising DRD children themselves. We are honored that they have chosen to share their wealth of knowledge with us.
Register via Zoom by clicking the button below.
In this Panel-style community chat, 3 community members will share their experiences with growing up affected, raising affected children into adulthood, and all the trials, tribulations, and joys that come with that. Questions can be asked ahead of time or in the Zoom chat. To protect the privacy of the participants, this event will not be recorded.
The panel will be moderated by Lisa, one of our founders, whose 10 year old daughter with DYNC1H1-related disorder will probably make an appearance because she loves Zoom calls.
Surveys Together: DA Community Research Completion Hour
Having trouble making time to get on Simons Searchlight? Want to participate in research but might need some support in actually finding the time? Simons Searchlight up to date and want to contribute to other studies? Hate doing surveys on your child's development and want support while you do them?
Well, so do we. Join Lisa and other members of the DA community on Zoom for an hour of participation in research, with the added bonus of accountability buddies. Get a cup of coffee, get comfy, and let's get down to the important business of research - together.
We'll also go through how each individual person's commitment to participating in research makes a real, meaningful impact on our ultra-rare community. We can't get to treatments without this work, and we can't do it alone.
What is DYNC1H1 and How Do Variants Cause Symptoms?
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
Community Conversation: Discussing speech and AAC with a SLP and mom of son with DYNC1H1
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
Puzzles for Piper
Hello Houston! Join us on Saturday August 16th for our second annual fundraiser - Puzzles for Piper!
Get your tickets here!
Taking Steps Toward Treatment Virtual Walk
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.
CVI in DYNC1H1
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
Community Chat
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
September Community Chat
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.
How to Get Grants and Funding for Medical Expenses
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.
Research Updates and Q&A with Dr. Hormos Dafsari
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!
August Community Chat
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.
All things AAC
Come learn all about Augmentative and Alternative Communication (AAC)! Shannon Leary, M.A., CCC-SLP, CPRCS, has worked at specialized clinics for speech, feeding, and AAC, including NAPA Center Boston and Spaulding Rehabilitation Hospital. She is an expert on AAC and is so excited to present and answer questions from families.
Register to attend on Zoom and send any questions you have to contact@dync1h1.org prior to the event!
July Community Chat
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.
IEP Crash Course
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.
Scientific Roundtable w. Dr. Peter Baas
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
Community Chat
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
Scientific Roundtable ft. Dr. Erika Holzbaur
Join us as we learn from 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 Perelman School of Medicine at the University of Pennsylvania. Her laboratory is dedicated to the research of motor proteins and their role in various neurodegenerative diseases. Her lab studies “mechanisms of force production and motor function, mechanisms of cargo coupling and regulation, effects of dynein and dynactin on dynamics of the cytoskeleton, and the analysis of neurodegenerative diseases resulting from impairments in dynein/dynactin function. Disruptions in dynein/dynactin function cause motor neuron degeneration and muscle atrophy, leading to motor neuron diseases similar to ALS.” Dr. Erika Holzbaur is a member of the DYNC1H1 Association Scientific Advisory Board, and we are delighted to have her speak.
Chat with a Genetic Counselor
Join us for a presentation by a neurology genetic counselor and a Q&A session to follow.
Join Simon's Searchlight with Brettne!
Find out why and how to support our community by registering and completing a profile on Simon’s Searchlight!
Kickoff Meeting
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!