Families and caregivers of individuals who have Rett Syndrome are invited to attend this free event. We are here to support and educate you along the journey to finding a cure. Family involvement is critical and your participation is needed every step of the way. Without you, research advancements go nowhere. We hope to see you at this annual event filled with updates, education, networking and fun! Due to space limitations, we are not offering sibling care this year. This is a full day of adult conversation, so please plan wisely for your needs. There will be a private changing area with a cot for those with special needs as well as unstaffed areas to take a quiet break.

Schedule:

8:00 – 8:45 a.m.            Check-In and Continental Breakfast

8:45 – 9:00 a.m.             Welcome and Introductions

9:00 -10:15 a.m.          Meet the New Chief Science Officer/Research Updates and Q&A

Dominique Pichard, MD

10:15 – 10:30 a.m.  Break

10:30 – 11:00 am         Why is Rett syndrome a Neurological Disorder?

Understanding the Complexities.

Tim Feyma, MD

11:00 - 11:45 a.m.        Assessing and Understanding Pain in Non-Verbal Patients

Chantel Barney, PhD and Frank Symons, PhD

11:45 a.m. to 12:15 p.m.                University of Minnesota Research Updates- Utilizing the

$40,000 gift!

Breanne Byiers, PhD and Frank Symons, PhD

12:15 – 1:15 p.m.                Lunch

1:15 -2:15 pm                                    Breakouts 

1. Waivered Services- Why do I need one and how do I use it?

Julie Lux

2. Nutrition- Oral and Tube Fed Essentials for Optimal Health,

Art Beisang, MD

2:15 – 2:30 p.m.                                 Break

2:30 – 3:30 p.m.                                Sibling Panel- Seeing Rett Syndrome from the Eyes of Others

3:30 – 5:30 p.m.                                Social Hour – 6th floor Café

Faculty:

Art Beisang, MD, Complex Care Pediatrician at Gillette Children’s Specialty Healthcare

Chantel Barney, PhD, Clinical Scientist at Gillette Children’s Specialty Healthcare

Breanne Byiers, PhD., Research Associate with the University of Minnesota

Tim Feyma, MD, Pediatric Neurologist at Gillette Children’s Specialty Healthcare

Melissa Kennedy, Executive Director at Rettsyndrome.org

Julie Lux, Strategic Relationship Manager at Managed Resource Connections, Inc.

Dominique Pichard, MD, Chief Science Officer at Rettsyndrome.org

Frank Symons, PhD., Associate Dean for Research and Policy with the University of Minnesota

Event Contact Info:

Amy Schall

Gillette Children’s Specialty Healthcare

amyschall@gillettechildrens.com

651-265-7387