Educational Webinars
The CACNA1A Foundation is proud to empower families through education with our webinar series.
A primer on CACNA1A (CaV2.1) channels: what they do and how they do it
This event was held on April 9, 2021.
Henry M. Colecraft, Ph.D., is the Associate Vice-Chair in the Department of Physiology and Cellular Biophysics at Columbia University Medical Center and has directed the Ion Channel Physiology Lab for the last 19 years. Dr. Colecraft has an active research program focused on understanding the mechanisms underlying CACNA1A-linked neurological disorders and discovering new molecular treatments for these diseases.
Introduction to the Genetics of CACNA1A-Related Disorders
This event was held on Feb 10, 2021.
Ingo Helbig, MD and Laina Lusk, MMSc, CGC of Children’s Hospital of Philadelphia (CHOP) provided a presentation followed by a live Q and A session for families.
Click here for a copy of the slides from the presentation.
Planning for the Future: Utilizing Special Needs Trusts & ABLE Act Accounts
This event was held on October 12, 2021
Stephen Ehrens, CPA specializes in financial planning for families with children who have special needs. As a Wealth Management Advisor and a passionate advocate for his child with special needs, Stephen is uniquely positioned to guide parents through the process of developing a customized financial and estate plan for their families. Learn more able Special Needs Trusts, ABLE Act Accounts, and Life Insurance to ensure continued support for your child.
Click here for a downloadable Letter of Intent
In partnership with our friends at DEE-P Connections, we are sponsoring a series of webinars on Optimizing Therapies for those Living with Developmental and Epileptic Encephalopathies (DEEs). The series will be led by Theresa Spong MED, PT, CBP who has decades of experience working with complex children and is the grandmother of a one-and-a-half-year-old girl with CACNA1A.
WEBINAR #1 - Impacts of Hypotonia on Overall Development
This event was held on January 13, 2022
This webinar will help parents/caregivers understand the impact of hypotonia and its effects on all systems of the body. Theresa discusses health-related issues of children and adults with hypotonia. Parents/caregivers will gain an understanding of how hypotonia impacts quality of movement and motor development. She also explores potential strategies for optimizing function and maximizing outcomes, including how to embed therapy into the daily routine.
Downloadable resources mentioned in the webinar:
2) Examples of activities that provide proprioceptive input
3) Muscle tone versus muscle strength
4) W-sitting, postural control and better options for your child
WEBINAR #2 - Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis, and Mixed Tone
This event was held on February 11, 2022
This webinar is the second in our series on Optimizing Therapies for those with DEEs, and will help caregivers understand the movement patterns of ataxia, hypertonicity, athetosis, and mixed tone, and how they impact overall development. Theresa Spong MED, PT, CBP, who has decades of experience working with complex children and is a CACNA1A grandmother, identifies treatment and strategies to help with practical everyday interventions. In addition, Theresa discusses the needs of children with complex motor impairments.
WEBINAR #3 - Adaptive Equipment and Therapy strategies for Children with Severe Developmental Delays
This event was held on March 10, 2022
This webinar is the third in our series on Optimizing Therapies for those with DEEs and focuses on more severely affected children and how adaptive equipment and positioning can greatly impact the ability to function in daily routines. Presenter Theresa Spong MED, PT, CBP discusses the importance of finding a good DME (Durable Medical Equipment) provider and how to get equipment covered/funded, including the elements of a strong Letter of Medical Necessity. She also explores strategies on how to build natural routines into the day that utilize proper positioning for participation and function in the school/home environment.
Stay tuned for more webinars!