CdLS Foundation Webinar Series

The CdLS Foundation is proud to present it’s annual webinar series featuring talks from medical and educational professionals. Each hour long session will cover important topics including gastroenterology (GI), genetic testing, behavior and medication.

Each webinar will feature a professional and hosted by the CdLS Foundation’s Family Services staff.

CDLS

Speech, Language, and AAC Devices

This webinar highlights multiple ways to address and improve speech, language, and communication issues in individuals with CdLS, including the evaluation for and potential use of AAC devices.
 
Presenters: Patti Caudill, M.S., CCC-SLP and C’Rai Weeden-Shannon, M.S., CCC-SLP
 

Navigating Your Health Plan

It is a challenge for just about everyone. Make sure you make the best selection possible for your family. Understanding your benefits and how to get the most from your health plan is even more important when someone has complex care needs.

Presenter: Linda Pierce, M.S.W., Program Director, Family Service

PowerPoint Presentation

Introducing the CdLS Health Care Notebook

Review the CdLS Foundation’s new advocacy tool that encourages better communication between families and the medical community, school systems, and social environments. This new feature will help you stay organized and help relieve some of the burdens of educating others about CdLS.
 
Presenters: Linda Pierce, M.S.W., Program Director, Family Service
 

Selective Mutism in CdLS

Selective mutism (SM) is found to be highly prevalent in the individuals with Cornelia de Lange syndrome (CdLS). This webinar outlines what SM is, and how it manifests in CdLS. The webinar also highlights the need to consider the linguistic, behavioral and cognitive impairments that are specific to the CdLS population when assessing and treating SM. Information contained in this webinar is intended for the professionals who work with CdLS as well as the parents/caregivers of CdLS.

Presenter: Asmita Mistry, MA CCC-SLP

COVID-19 and Individuals with CdLS

For more than 39 years, the Cornelia de Lange Syndrome (CdLS) Foundation has been focused on improving the health and well-being of individuals living with CdLS and their families. Now, as the CdLS community confronts the COVID-19 pandemic, you are invited to join the Foundation and Drs. Antonie Kline and Soma Jyonouchi for a 30-minute webinar to hear how it affects individuals with CdLS and learn of resources that can help during this public health crisis.
Presenters: Antonie Kline, M.D. and Soma Jyonouchi, M.D.

Fundraising for Conference

With the National Family Conference approaching in just under 10 months, now is the time to plan and save. Tasha Howland, Life Coach and mom to Peyton, will offer tips and strategies that you may find helpful to cover your expenses for Conference. She will also offer some fun ideas to help you get started on your way to your goals!

Presenter: Tasha Howland

PowerPoint presentation

Gastrointestinal (GI) Challenges: Critical Care and Treatment Approaches

This webinarprovided an overview of malrotation, volvulus, bowel obstruction and pancreatitis. It also reviewed treatment and care approaches to these challenges.

Presenter: Carol Potter, M.D.

PowerPoint presentation

Neurodevelopmental Disorders and Behavioral Management in Cornelia de Lange Syndrome (CdLS)

This webinar provided an overview of neurodevelopmental challenges, including approaches to treatment, in Cornelia de Lange syndrome (CdLS). Individuals with CdLS can be affected by a number of developmental disorders, including intellectual disability, autism spectrum disorder, language disorder, ADHD, aggression, repetitive self-injurious behaviors, anxiety, and depression. This webinar will discuss each of these domains as it relates to CdLS, as well as strategies for pharmacological intervention.

Presenter: Siddharth Srivastava, M.D.

PowerPoint presentation

How to Address Challenging Behaviors Webinar

This webinar will discuss:
• Self-injury
• Impulse control
• Destruction of property
• Determining the appropriate consequences
• Treatment options (ABA, etc.) or professional resources for families

Presenter: Julia O’Connor, Ph.D.

PowerPoint presentation

Genetic Testing and CdLS

This webinar discussed:

  • Clinical vs genetic testing
  • Various gene mutations associated with CdLS
  • Genetic testing that is available (including prenatally)
  • What are the benefits of getting tested
  • Are there different medical approaches to treatment for the various gene mutations
Presenters: Sarah Raible, M.S., C.G.C. and Alena Egense, MGC, CGC.

Phenotypic Analysis of Patients with SMC1A Mutations and Epilepsy

This webinar discusses how girls with SMC1A and epilepsy fit into the spectrum of Cornelia de Lange Syndrome (CdLS). It characteristics of their seizures, as well as treatment.

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