Empowering Families | Educating Communities | Advancing Research

In-person & livestreamed online

Registration is $5/family

Learn about:

• Rett Syndrome, CDKL5 Deficiency Disorder and many more diagnoses seen at Rett Clinic

• Advances in treatment & research

• Family resources & caregiver support

• Advocacy opportunities & more

Agenda:

7:45AM – 8:00 AM: Check-in & Light Breakfast

 8:00 AM – 8:10 AM:
Opening Remarks & Overview of the Day

Host/Organizer Welcome

Explanation of hybrid format and housekeeping

Speaker Sessions:

• 8:10 AM – 9:00 AM

  • Rett and MECP2 research update

  • Speaker: Dr. Tim Benke

• 9:00 AM – 9:30 AM

  • Genetics seen at RETT Clinic Colorado

  • Speaker: Dr. Margarita Saenz

•  9:30 AM – 10:15 AM

  • Cortical Vision Impairment

  • Speaker: Elise Darrow (Anchor Center for Blind Children)

•  10:15 AM – 10:45 AM

  • Nutrition and Diet

  • Speakers: Laura Watne

•  BREAK – 10:45 AM – 11:00 AM

Community Support & Family Resources:

• 11:00 AM – 11:45 AM

  • Home Health Services/Palliative/ Hospice Care

  • Speaker: Vivian (Sena) Yoon

•  11:45 AM – 12:15 PM

  • Family Voices & Augmentative Communication

  • Speaker: Emi Yau

• 12:15 PM – 12:45 PM

  • Trust and Guardianship

  • Speaker: Mark Reiley (CFPD Trust)

•  12:45 PM – 1:15 PM

  • CDKL5 research updates

  • Speaker: Dr. Tim Benke

•  1:15 PM – Q&A

• Lunch & Meet and Greet

• Enjoy lunch, connect with speakers, and continue the conversation in an informal setting.