2019 Seattle DYRK1A Family Meetup Conference

Amy Clugston, DYRK1A Syndrome US

• Meetup Planning committee, Thank You!

  • Adrianne Apodaca

  • Julie Hutson

  • Carolle O’Neil

  • Amy Clugston

• George Gillespie, Thank You!

  • DYRK1A Syndrome US is now a nonprofit tax exempt 501c3

  • Tax ID: 83-3342162

  • Articles of Incorporation

• Board of Directors, Thank You!

  • Amy Clugston

  • Adrianne Apodaca

  • Priscilla Guzman

  • Ashley Allen

  • Jennifer Carfora

  • Ted Hans III

Jennifer Tjernagel, Simon Searchlight

• Presentation Slides

  • What are the benefits of getting involved

  • What does the data show

• Registry Snapshot

  • How to get involved

  • Snapshot of the data

• Caregiver Handout

  • A helpful tool to fill out and share with caregivers

• Simons Searchlight

Jenna Hutson & Madi Holbert, Sibling Panel

• Jenna is a older sister to Jayce and Madi is a older sister to Jackson, they shared what it was like growing up as siblings and answered questions from attendees.
  

Raphael Bernier, PhD - Welcome

• Dr. Bernier from Bernier Labs welcomed speakers and kept us on track.
  

Rachel Earl, PhD - Recent Published Findings & Tiger Study Update

• Presentation Slides

  • Brain Cell Growth

  • Missense Mutations

  • Mouse Models

• Tiger Study

• Slides & Audio (Coming Soon)
  

Soo-Jeong Kim, MD - Pharmacologic Intervention in Neurodevelopmental Disorders

• Presentation Slides

  • Behaviors & Medication

• Slides & Audio (Coming Soon)
  

Karen Bearss, PhD - Behavioral Strategies

• Presentation Slides

  • Understand “why” a behavior is occurring

  • Learn how to assess your child’s behavior

  • Review treatment options for challenging behaviors

• Slides & Audio (Coming Soon)
  

Lynn Vigo, MSW, LICSW - Mindful Self-Care for Parents

• Presentation Slides

  • Increase awareness and understanding of stress associated with parenting a child with extra needs

  • Identify 2 good reasons for caring for self while caring for others.

  • Identify 2 mindfulness strategies aimed at reducing stress.

• Slides & Audio (Coming Soon)

• Lynn Vigo, Voices of Autism 2017 - Video
  

Caitlin M Hudac, PhD - Small Group Discussions

• Dr. Hudac lead us into small groups discussions

  • Under 3 Years

  • Preschool Age

  • School Age

  • Transition & Adult Stage

  • Adult Siblings

Pajama Ice Cream Social Dance

• Last year our Pajama Ice Cream Social Dance was a huge hit so we brought it back this year.

• Seeing the smiles on the kids faces makes it a much needed activity.

• This year we were able to hire a DJ Duo that included a young adult with Autism

Woodland Park Zoo

• Many of the families enjoyed a day at the zoo to end their Meetup Fun