Annual SMA Conference

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Agenda

2023 Annual SMA Conference
 Yacht & Beach Club Resort | Orlando, Florida
June 29 – July 2, 2023
Below is a brief agenda for the 2023 Annual SMA Conference! A full agenda with workshop descriptions will be available when the conference booklet is announced closer to conference. Check back for updates.  **Also, note that this schedule is subject to change. **

Wednesday, June 28th
5:00pm – 7:30pm                    Registration Open for all Conference Attendees      
                                                                                                                                                                                   
Thursday, June 29th
9:00am – 6:00pm                    Registration Open for all Conference Attendees   
12:00pm – 2:20pm                  Newly Diagnosed Program
                                                (For Newly Diagnosed Families Only)
12:00pm – 2:20pm                 Children’s Program & Baby Room    
                                                (For Newly Diagnosed Families Only)          
2:30pm – 6:00pm                    Adults with SMA Lounge Sponsored by Biogen                                                                                                       
6:00pm – 8:30pm                   Meet & Greet for all Conference Attendees  
6:00pm – 8:30pm                   Disney Characters
7:00pm                                   Researcher Relay Race                                                    
8:30pm – 11:00pm                 Dad’s Night Out
8:30pm – 10:00pm                 Double Take Fashion Show Sponsored by Genentech                                                                         
Friday, June 30th
7:00am                                    Breakfast starts
7:15am – 5:30pm                    Registration and Check-In                                                    7:15am – 5:00pm                    Exhibitor Booths Open                                               7:45am – 8:45am                    Breakfast Symposium, Sponsored by Genentech
                                                              
9:00am – 12:30pm                 Children’s Program & Baby Room (Drop off opens at (8:15am and 1:15pm 
& 1:45pm – 4:45pm)               
 
9:00am – 10:30am                  Kids Talk it Out (Ages 12 - 17)                                                        
9:00am – 11:00am                  General Session Opening Remarks
                                     
11:00am – 5:00pm                  Adults with SMA Lounge Sponsored by Biogen
11:00am – 5:00pm                  Teen Lounge Sponsored by Luke 18:1 Foundation
11:15am – 4:45pm                  Novartis Gene Therapies Activity Room

11:15am – 4:45pm                  Community Connection Area Sponsored by Genentech 

11:15am – 12:30pm                Workshop Session #1                                                                                                              -Orthopedic Management in SMA
                                                    -Personal Care Assistants: From Recruitment and                                                Hiring to Day-to-Day Management and Everything In-Between
                                                    -Taking Charge of Your Health: The Transition from                                                       Pediatric to Adult Care Sponsored by Genentech
                                                   -Spouses and significant others of adults with SMA                                                        sharing your experience
                                                   -Aquatic Physical Therapy Q & A Session
                                                   -Sleep Problems Seen in SMA

​                                                   -Addressing the Oral Motor System to Support                                                       Breathing, Eating and Speaking: Considerations for SMA
                                                   -"Talk it Out" for Kids with an SMA-affected Parent                                                            (Ages 6 - 17)
                                                   -Siblings Talk it Out (Ages 12 to 17)
​

12:30pm – 1:45pm                  Annual SMA Conference Lunch 
12:30pm – 1:45pm           Annual SMA Conference Lunch For Florida Chapter Gathering
 

1:45pm – 3:15pm                    Workshop Session #2
                                                    -Dating Disabled: Navigating the Dating World as a                                                        Disabled Person
                                                    -The Role of Therapy PT and OT in Your Child's Life -                                                    Being Part of the Team!
                                                    -Technology that Makes Life Easier Sponsored by                                                          Genentech
                                                   -Pre-symptomatic and Early Diagnosis Experiences
                                                   -Pediatric Therapeutic Yoga for SMA
                                                   -Healing the Grieving Heart - Part 1

​                                                   -Aquatic Physical Therapy for Fun & Function, Children                                                with Supported Head Control (Ages 8 - 13 years old)
                                                   -What it Means to be a Teen on Wheels
                                                   -Siblings Talk it Out (Ages 5 to 11)


3:30pm – 4:45pm                    Workshop Session #3            
                                                    -Pregnancy with SMA
                                                    -Beyond High School - Understanding the Barriers Students with Disabilities Face so we can Prepare Students to Advocate for Themselves
                                                    -Traveling with SMA
                                                   -Ethics, Angst, Excitement and Realities of SMA                                                             Treatments and Research
                                                  -Financial and Estate Planning with Special Needs Trusts
                                                   -Incorporating Exercise into Your Life

​                                               -Finding Hope After Loss: Helping Parents & Children Cope
                                                   

6:30pm – 8:30pm                    Family Friendly Researcher Poster Session
6:30pm – 8:30pm                    Disney Characters     
7:30pm – 9:15pm                    PJ Party and Movie Night

7:30pm – 10:00pm                  Teen Social Sponsored by Luke 18:1 Foundation               

8:00pm – 11:00pm                   Adults with SMA Reception
                                                Sponsored by Biogen & Dhont Foundation

8:30pm – 11:00pm                  Mom’s Night Out

Saturday, July 1st   
7:00am                                    Breakfast starts
7:15am – 4:00pm                    Registration and Check-In                                          ​7:15am – 4:00pm                    Exhibitor Booths Open           
7:45am – 8:45am                    Breakfast Symposium, sponsored by Biogen

9:00am – 12:00pm                 Children’s Program & Baby Room (Drop off opens at 8:30am and 12:45pm)
& 1:15pm – 4:00pm               
                                                           
9:00am – 4:00pm                    Teen Lounge Sponsored by Luke 18:1 Foundation
9:00am – 4:00pm                    Adults with SMA Lounge Sponsored by Biogen
9:00am – 4:00pm                    Novartis Gene Therapies Activity Room
9:00am – 4:00pm                    
Community Connection Area Sponsored by Genentech

9:00am – 10:30am                  Workshop Session # 4
                                                    -Unpacking Clinical Trials
                                                    -Therapeutic Yoga for Adults and Teens with SMA
                                                    -Mindfulness for Stress Reduction
                                                    -The Role of the Multi-disciplinary clinic- why it might be                                                   helpful for those identified pre-symptomatically
                                                    -Medical Management of Adults with SMA
                                                    -I Need to Cough, I Need to Breathe
​                                                    -Service Dogs: Safety, Independence, Confidence
                                                    -Navigating the Special Education Process: Setting our                                            Children up for Success in Preschool and Elementary School
 
                                                   -Aquatic Physical Therapy for Fun & Function,                                                                  Sitting/Walking Children - Ages 6 months to 7 years
                                           -Memory Boxes: Create a Treasure (for children & teens only)


10:45am – 12:15pm                Workshop Session # 5
                                                   -The Caregiver's Toolbox (Essentials)
                                                   -How to Build Your Presence and Advocate Through                                                   Writing & Social Media Sponsored by Genentech
                                                   -SMA and Dating/Sex Roundtable Discussion
                                                   -Keepsake Creation: Grieving Through Art
                                                   -Transition from Elementary to Middle School
                                                   -Benefits of Adaptive Recreation
​                                                   -What is an ABLE Account, and Should You Have One?
                                                   -Genetics and Reproductive Options for SMA Families
 
                                                  -Aquatic Physical Therapy for Teens & Adults
                                                   -Kids Talk it Out (Ages 6 to 11)


12:15pm – 1:15pm                  Lunch
 
1:15pm – 2:30pm                    Workshop Session # 6                                                                                                           -Adults with SMA Relationships Panel - Sharing Your                                                        Experience
                                                   -Nutrition for Life!
                                                   -Preventing Emergencies - Daily Care, Contingencies                                                    and Response in the Community
                                                    -Women's Health in SMA
                                                    -Change Your Brain, Change Your Life
                                                    -Navigating the Special Education Process - High                                                            School & College
​                                                    -You're Invited: Fundraising Power Hour
                                                    -Healing the Grieving Heart - Now What? Part II
 
                                                   -Grandparents Coffee and Share Your Experience
                                                    -Aquatic Physical Therapy for Fun & Function, children                                                  with supported head control


2:45pm – 4:00pm                    Workshop Session # 7   
                                                    -Early Scoliosis Treatment in SMA
                                                   -Young Adults Talk it Out (Ages 18+)
                                                   -University of Utah TRAILS Program: Adaptive Sports                                                      and Novel Adaptive Equipment
                                                    -Plan an Abilities Awareness Week at Your School
                                                    -Q & A Session with the Pulmonary Team
                                                    -Get to the Art of It: Community Art Time
​                                                                                                    
4:00pm                                    Cure SMA Evening at the Park
                                                           
Sunday, July 2nd    
7:45am – 8:45am                    Breakfast
9:00am – 11:15am                  Children’s Program & Baby Room (Drop off opens at 8:30am)
9:00am – 11:15am                  Closing General Session – It’s a Wonderful Life Panel            


To see the full conference booklet with workshop descriptions, speaker bios, exhibitor information and much more from the 2022 Annual SMA Conference, check out our 2022 Annual SMA Conference Booklet

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