Thursday, May 21, 2020
Early Registration
| 6:00 - 8:00 p.m. | Early Registration |
Friday, May 22, 2020
Communication and Connections
| 7:30 - 8:15 a.m. | Registration and Continental Breakfast |
| 8:15 - 8:30 a.m. | Welcome and Announcements |
| 8:30 - 10:15 a.m. | Core Vocabulary: A Foundation for Communication and Literacy
Patrick Brune, M.S., CCC-SLP and Maureen Donnelly, B.S, M.Ed |
| 10:15 - 10:45 a.m. | Break and Exhibit Viewing |
| 10:45 - 12:00 p.m. | Instruction vs. Assessment: How, What, When
Patrick Brune, M.S., CCC-SLP and Maureen Donnelly, B.S, M.Ed |
| 12:00 - 1:00 p.m. | Lunch and Exhibit Viewing |
| 1:00 - 2:30 p.m. | Reading: Beginner's Shared Reading to Conventional Reading
Susan Norwell, M.A. Special Education, ATACP |
| 2:30 - 3:00 p.m. | Break and Exhibit Viewing |
| 3:00 - 4:00 p.m. | Writing: Foundational Skills to Writing to Communicate
Susan Norwell, M.A. Special Education, ATACP |
| 4:00 - 5:00 p.m. | Encouraging Independent Activities: Ideas for Books, Academics and Leisure on the Tobii
Jennifer Facchinelli, B.Ed and Parent |
| Friday Evening - Light Dinner and Networking | |
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Saturday, May 23, 2020
Science, Medicine and a Meaningful Life
| 7:30 - 8:15 a.m. | Continental Breakfast |
| 8:15 - 8:30 a.m. | Welcome and Announcements |
| 8:30 - 9:00 a.m. | Introduction to Genetics
Victoria Siu, MD |
| 9:00 - 9:45 a.m. | Overview of Rett Syndrome Research
James Eubanks, PhD |
| 9:45 - 10:00 a.m. | What is Stem Cell Research?
James Ellis, PhD |
| 10:00 - 10:15 a.m. | New Drug Development
Mark Reed, PhD |
| 10:15 - 10:30 a.m. | Break and Exhibit Viewing |
| 10:30 - 10:45 a.m. | Rett Syndrome Brain Donation
Patrick MacLeod, MD |
| 10:45 - 11:30 a.m. | "Ask a Scientist" Panel
- Nathalie Bérubé, PhD |
| 11:30 - 12:00 p.m. | An Overview of Rett Syndrome Therapies
Vithya Gnanakumar, MD and David Yang, Master's Student |
| 12:00 - 1:00 p.m. | Lunch and Exhibit Viewing |
| 1:00 - 1:30 p.m. | Medical Care for Children with Rett Syndrome
Erin Brandon, NP and Laura McAdam, MD |
| 1:30 - 2:00 p.m. | Medical Care for Adults with Rett Syndrome
Melissa Carter, MD, and Caitlin Cassidy, MD |
| 2:00 - 2:45 p.m. | "Ask a Doctor" Panel
- Erin Brandon, NP |
| 2:45 - 3:00 p.m. | Break and Exhibit Viewing |
| 3:00 - 3:30 p.m. | Adulthood Can Be Awesome!
Terry Boyd and Sherry Lawrence, Parents |
| 3:30 - 4:00 p.m. | Person-Centred Planning: Learning to Dream
Mirjam Schut, Independent Facilitator |
| 4:00 - 4:30 p.m. | Life After High School: Raising Awareness about Accessibility
Abby Congram, Individual with Rett Syndrome |
| Saturday Evening - Celebration Dinner | |
| 6:00 p.m. Reception
6:30 p.m. Dinner |
O.R.S.A. invites everyone to come enjoy a Celebration Dinner.
Let’s celebrate by recognizing the hard work of all the dedicated people sharing our vision- past, present and future. You’re welcome to invite your friends and family, including those who have not attended the conference. Additional Celebration Dinner tickets are available for purchase at the cost of $50.00 per adult or $25.00 per child (3 –10 yrs.). You may order these extra tickets when you register. *Individuals with Rett Syndrome will be O.R.S.A.’s special guests and will receive a complimentary celebration dinner. Please make your selection when you register. |
Sunday, May 24, 2020
A Vision for Tomorrow
| 7:30 - 8:15 a.m. | Continental Breakfast |
| 8:15 - 8:30 a.m. | Announcements and Feedback Forms |
| 8:30 - 9:15 a.m. | Mindful Self-Compassion for Caregivers Jane Cassano, MSW |
| 9:15 - 10:00 a.m. | Navigating Quality of Life in a Sea of Medical Complexity: Partnering with Health Care to Maximize Joy
Dave Lysecki, MD |
| 10:00 - 10:15 a.m. | Break |
| 10:15 - 10:45 a.m. | Clinical Trials: Building a Research-Ready Community of Families and Clinics Melissa Kennedy, MHA |
| 10:45 - 11:30 a.m. | Clinical Trials in Canada: From Basic Research to Potential Treatments Evdokia Anagnostou, MD and James Eubanks, PhD |
| 11:30 - 12:00 p.m. | Question Panel about Clinical Trials
- Evdokia Anagnostou, MD |
| 12:00 p.m. | Final Remarks and Lunch |