AJE is excited to share this event with our community from Autism Intervention Research Network on Physical Health happening tomorrow at 4pm!
This event is about the current advances in the knowledge of the genetic contributions to physical health and its integration into medical care have generated both opportunities for advancing healthcare and critical gaps in knowledge on its impact. They will introduce the landscape of genetic advances for individuals with neurodevelopmental differences, from diagnostics to ancestry and predictive risk. They will also explore the current state of genetics within healthcare, the role of early diagnosis on outcomes, opportunities for implementation of individualized interventions, and discuss future directions for this advancing field.
AIR-P Presents: Genetics Care in Adults and Children with Autism and Neurodevelopmental Disabilities
Friday, September 24, 2021
4:00 p.m. – 5:00 p.m. ET
Location: Zoom Webinar
Presenters:
Dr. Julian Martinez-Agosto is a Steering Committee Member of the California Center for Rare Diseases, a Principal Investigator in the Undiagnosed Diseases Network Site at UCLA, a site Principal Investigator for the Rare Diseases Clinical Research Network, and Co-Director of the Care and Research in Neurogenetics (CARING) Program. Dr Martinez-Agosto also participates in Pediatric Genetics efforts within the Los Angeles County Department of Public Health system, which provides genetic services to underserved medical populations. These genetics services and interventions aim to achieve early diagnosis and multi-disciplinary care that meets the individualized needs of underserved individuals with neurodevelopmental disabiities and autism. His participation in multi-institutional collaborative studies at both national and international levels has led to many publications describing novel genetic conditions, their associated physical manifestations, and the impact of genetic testing interventions on care of individuals with neurogenetic disabilities.
Please Note:
- CART captioning will be provided. For additional disability accommodations please email Jennifer Tuell at jtuell@aucd.orgtwo weeks prior to the event with name of event and accommodation preference in your response.
- There is no cost for this webinar.
- CEUs are not offered for this webinar.
- This webinar will be held on the Zoom Platform. You can test your connection with Zoom before joining the meeting here.
- This webinar will be archived and available on the AUCD Webinar Library.
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Are you still curious about what genetic services are and who should access them?
What are genetic services?
Genetic services include any testing, counseling, or educational resources that are provided for an individual that has or may be at risk of having a genetic condition. Genetic testing is used to detect a genetic disorder by analyzing small samples of body tissue or blood. Genetic counseling can involve checking family medical history, ordering genetic tests and evaluating their results, and helping parents understand and reach decisions about what to do next, including making decisions about the types of care that might be most appropriate. Genetic counselors can also share their experiences with families who have been through similar situations. Additionally, they can refer families to support groups, medical specialists, and mental health resources.
Who should access genetic services?
A genetic disorder is a medical condition that is caused by a DNA abnormality. It can be inherited from the parents or caused by a genetic mutation resulting from random or environmental factors. Humans have around 25,000 genes per cell and an error in just one gene can result in a serious genetic disorder. While some of the most commonly identified genetic disorders are conditions such as Down syndrome or Fragile X syndrome, others include cystic fibrosis, attention deficit hyperactivity disorder (ADHD), sickle cell disease, and type 1 diabetes. Nearly all diseases have a genetic component and many could be better managed through the use of genetic services.
The American College of Medical Genetics and Genomics strongly recommends that children with intellectual disability, developmental delay, or other congenital anomalies undergo genetic testing. Genetic testing can help to identify genetic variations which, in turn, will contribute to higher quality care for children with identifiable conditions. Click here to learn more about the organization’s recommendations.
Genetic Disorders and Special Education
Due to their genetic condition, some children may need a specially designed educational program. Through the Individuals with Disabilities Education Act (IDEA), the federal government has ensured that eligible children with disabilities have a right to free appropriate public education, which includes an individualized education program (IEP) that is tailored to the student’s specific needs. In order to qualify for special education services, a student must have a disability and require special education as a result of that disability. Click here to learn more about the special education process.
Genetic Resources
National Coordinating Center for the Regional Genetics Networks
NYMAC Regional Genetics Network
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