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Friday, October 11, 2019
Boston Marriott Copley Place | Boston, MA

Agenda

Thursday, October 10, 2019

Hosted in Salons H - K

6:00pm: Reception

6:30pm: Dinner served

Friday, October 11, 2019

Hosted in Salon E

8:00am: Breakfast

8:30am: Welcome

8:30am - 9:20am: Patient Care and Registry
- Local Care Center Network
- Clinical Data Registry
- SMA Newborn Screening Portal Registry

9:20am - 9:40am: AveXis Update

9:40am - 9:55am: Development
- National Endurance Program
- Marketing & Communication’s Update
- Care Center Network Fundraising Opportunities

9:55am - 10:15am: Engaging New Families Panel: Kenneth Hobby, Erin Kelly, Colleen McCarthy O’Toole, Mary Schroth, Jill Jarecki

10:15am - 11:35am: Strategic Plan Updates: Kenneth Hobby, Richard Rubenstein, Nick Farrell
- Current Strategic Plan Results
- New Strategic Plan Ideas

11:35am - 12:00pm: Lunch Buffet Open

12:00pm - 12:20pm: Advocacy Update
- Newborn Screening
- SMA NBS State Lab Support and Outreach
- Policies, Coverage, and Access

12:20pm - 12:40pm: Engaging and Supporting Adults with SMA Panel: Kenneth Hobby, Erin Kelly, Colleen McCarthy O’Toole, Mary Schroth, Jill Jarecki
- Adults with SMA Advisory Council

12:40pm - 1:00pm: Genentech Update

1:00pm - 1:30pm: The Cure SMA Research Strategy
- Research Funding
- Using Patient Data to Understand SMA
- Current and Future Clinical Trials
- Combinations

1:30pm - 1:45pm: Family Support and Programs Update
- Programs and Results
- Annual SMA Conference
- Summit of Strength Program

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