2022 Annual SMA Conference

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Agenda

2022 Annual SMA Conference
 Disneyland Hotel | Anaheim, California
June 16 – 19, 2022
Please view the 2022 Annual SMA Conference Basic Agenda Below, more specific details of events, workshops and more will be available in the coming months.

**Please note that this agenda is subject to change**

                                           Wednesday, June 15th
5:00pm – 7:30pm                    Registration Open for all Conference Attendees   ​

                                                Thursday, June 16th
7:00am – 5:30pm                    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
​
4:30pm – 6:00pm                    Newborn Screening Meet & Mingle                                      6:00pm – 8:30pm                    Meet & Greet for all Conference Attendees                          8:30pm – 10:30pm                  Dad’s Night Out


                                                Friday, June 17th
7:00am – 5:30pm                    Registration and Check-In                                                                 
7:00am – 5:30pm                    Exhibitor Booths Open                                                                                              
7:30am                                    Breakfast starts
7:45am – 8:45am                    Breakfast Symposium                                                           
8:45am – 12:30pm                  Children’s Program & Baby Room
& 1:45pm – 5:00pm 
                                                                       

9:00am - 10:30am                   Kids Talk it Out (Ages 11 - 17) 
9:00am - 10:30am                   Siblings Talk it Out (Ages 12 - 17)

9:00am – 11:00am                  General Session Opening Remarks

10:45am - 5:15pm                   Adults with SMA Lounge    
                                 

11:15am – 12:30pm                Workshop Session # 1
                                            ~Aquatic Physical Therapy Question & Answer Session
                                                      ~Ethics, Angst, Excitement and Realities of SMA Treatments and Research

                                            ~Using Muscle-Based Exercises for Speech Clarity and Feeding
                                                      ~Women's Health in SMA
                                                      ~Therapeutic Yoga for Adults and Teens with SMA
                                                      ~"Talk it Out" for Kids with an SMA-affected Parent (Ages 6 - 17)


12:30pm – 1:30pm                  Lunch  
                    

1:45pm – 3:15pm                    Workshop Session # 2
                                          ~Taking Charge of Your Health: The Transition from Pediatric to Adult Care
                                                    ~The ABLE Act: EnABLE Savings for Life
                                                    ~Change Your Brain - Change Your Life: The number one tip from a                                                                        Disability Life Coach
 
                                         
~Pediatric Therapeutic Yoga for SMA
                                                    ~Spouses and significant others of adults with SMA sharing your experience
                                                    ~Healing the Grieving Heart - Part I
                                                    ~Aquatic Physical Therapy for Fun & Function, Children with Supported                                                                Head Control
                                                   ~Using Our Breath for Big Emotions: Mindfulness for Kids
 
                       
3:30pm – 5:00pm                    Workshop Session # 3
​    
                                      ~Medical Management of Adults with SMA
                                                    ~The Role of PT and OT in your child's life: Being part of the team!
                                                    ~I Need to Cough, I Need to Breath, I Need to Sleep
                                                    ~Grandparents Coffee and Mingle
                                                    ~Aquatic Physical Therapy for Fun & Function, Children with Independent                                                                Head Control
                                                    ~Adults with SMA Relationships Panel - Share your experience

                                                     ~Memory Boxes for Siblings: Creating a Lasting Treasure                                                                                       (for children only)


6:30pm – 8:30pm                    Family Friendly Researcher Poster Session
7:30pm – 9:30pm                    PJ Party and Movie Night
7:30pm - 10:00pm                   Teen Social
8:30pm – 10:30pm                  Adults with SMA Reception   
8:30pm – 10:30pm                  Mom’s Night Out

                                                Saturday, June 18th   
7:30am – 4:30pm                    Registration and Check-In                                                                 
7:30am – 4:30pm                    Exhibitor Booths Open           
7:30am                                    Breakfast starts
7:45am – 8:45am                    Breakfast Symposium                                                            
8:45am – 12:15pm                  Children’s Program & Baby Room    
& 1:15pm – 4:15pm
                                                                          

9:00am – 10:30am                  Workshop Session # 4
                                                       ~Orthopedic Management in SMA
                                                       ~Driving and Community Mobility
                                                       ~Keepsake Creation: Grieving Through Art
                                                       ~Unpacking Clinical Trials
                                                       ~Young Adults Talk it Out (Ages 18+)
                                                       ~Genetics and Reproductive Options for SMA Families 
                         

9:00am - 4:15pm                     Adults with SMA Lounge
                    

10:45am – 12:15pm                Workshop Session # 5
                                                  ~Navigating the Special Education Process: Setting Our Kids Up for Success
                                                  ~An Approach to Exercise in Individuals with SMA
                                                  ~Special Needs Trust Estate Planning
                                                  ~Hold it No More: A Panel Discussion on Suprapubic and Mitroanoff                                                                       Catheterization Options 
 
                                         ~Benefits of Adaptive Recreation and Cycling
                                                   ~Aquatic Physical Therapy for Fun & Function, Teens and Adults
                                                   ~Healing the Grieving Heart, Now What? Part II 
                                          

12:15pm – 1:15pm                  Lunch

1:15pm – 2:45pm                    Workshop Session # 6                                                                                                    ~Siblings Talk it Out (Ages 5 to 11)
                                                    ~Service Dogs: Safety, Independence, Confidence
                                                    ~How to Build Your Presence and Advocate Through Writing & Social Media
                                                    ~The Caregiver's Toolbox (Essentials)
                                                    ~A Lifetime of Good Nutrition
                                                    ~What it Means to be a Teen on Wheels

                       

3:00pm – 4:15pm                    Workshop Session # 7
                                           ~Kids Talk it Out (Ages 6 to 10)
                                                     ~Early Scoliosis Management in SMA
                                                     ~University of Utah TRAILS Program: Adaptive Sports and Novel
                                                        Adaptive Equipment
                                                      ~Finding Hope After Loss: Helping Parents and Children Cope 
                                                      ~Emergencies - Anticipation, Prevention and Readiness in the Community
                    
4:30pm                                    Cure SMA Evening at the Park

                                                Sunday, June 19th    
7:30am                                    Breakfast starts
7:45am – 8:45am                    Breakfast Symposium
​

9:00am – 11:15am                  Children’s Program & Baby Room                                                                  
9:00am – 11:15am                  Closing General Session – It’s a Wonderful Life Panel  ​
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