Rett Syndrome Education Day

Saturday April 4, 2020 | 8 a.m. - 5:30 p.m.
10 River Park Plaza St. Paul, MN 55107 Ground floorLocation Marker

Event Details

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.

Host Hotel

Drury Plaza Hotel St. Paul Downtown
175 10th Street E, St. Paul, MN 55101

Special event room rate for conference attendees:
Special event room rate for conference attendees is $119. Hotel guests enjoy free hot breakfast, free snacks and cold beverages at the 5:30 Kickback® and free Wi-Fi throughout the hotel. Hotel parking (on-site, self-park): $12 plus tax per night. May be higher during special events.

Please make your reservations by Monday, March 2, 2020 to receive your group rate. Reservations made after this date will be subject to prevailing rate and availability. Reservations may also be made by calling 1-800-325-0720 and refer to your group number 2404222.

Online booking link:
Click here to book online with the Drury Hotel

Contact Information

Amy Schall
Gillette Children’s Specialty Healthcare


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

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

9 – 10:15 a.m.
Meet the New Chief Science Officer, Dominique Pichard, MD/Research Updates and Q&A
Dominique Pichard, MD

10:15 – 10:30 a.m.

10:30 – 11:00 a.m.
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. – 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.

1:15 – 2:15 p.m.
1. Waivered Services — Why Do I Need One and How Do I Use Tt?
Julie Lux

2. Nutrition — Oral and Tube Fed Essentials for Optimal Health
Art Beisang, MD

2:15 – 2:30 p.m.

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


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

Melissa Kennedy, Executive Director at

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

Dominique Pichard, MD, Chief Science Officer at

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