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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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