Upcoming events.
Check out our past events page to watch recordings of events we’ve hosted!
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!