Rett Syndrome Education DaySaturday April 4, 2020 | 8 a.m. - 5:30 p.m.
10 River Park Plaza St. Paul, MN 55107 Ground floor
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.
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
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?
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 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