Past Events
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How to Get Grants and Funding for Medical Expenses
September 17, 2024
The DYNC1H1 Association, along with DEE-P Connections, welcomed Advocacy Abby, who presented on how families with medically complex children can navigating the complexities of grants and other funding sources. Check out her website or her Grant Connector Tool!
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Research Updates with Dr. Hormos Dafsari
September 3, 2024
Learn about the progress the DYNC1H1 Association has made in the last year, hear updates from Dr. Dafsari's lab, and listen to Dr. Dafsari answers questions from the community.
Slides from Dr. Dafsari and slides from Lisa Costen are available here.
If you would like the slides from this event in another language, please email contact@dync1h1.org and specify which language you would prefer.
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All Things Augmentative and Alternative Communication (AAC)
August 21, 2024
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, with over a decade of experience, and is so excited to present and answer questions from families.
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IEP Crash Course
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.
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Scientific Roundtable with Erika Holzbaur, PhD
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
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Simons Searchlight and DYNC1H1
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!
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Talk with a Genetic Counselor
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.
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Community Kickoff
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!