Clinical Care Mtg Title

2018 Clinical Care Meeting

June 16, 2018
Hilton Anatole Hotel | Dallas, TX

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1:00 PM Welcome
Mary Schroth, MD, Cure SMA


1:10 PM Using the updated standard of care guidelines for SMA in the era of new treatment opportunities
Richard Finkel, MD, Chief, Division of Neurology, Nemours Children's Hospital

1:40 PM SMA Standard of Care panel discussion

2:00 PM "The whole game is changing and you've got hope": Decision making in Spinal Muscular Atrophy care
Michelle Farrar, MD Sydney Children’s Hospital

2:20 PM Navigating Genetic Testing in 5q Related Spinal Muscular Atrophy
Melissa Gibbons, MS, CGC, Children's Hospital Colorado/University of Colorado



2:55 PM Utilizing SATCo to Assess Trunk Control in Patient's with SMA Undergoing Spinraza Treatment
Katherine Kundrat, PT, DPT, Children's National Medical Center

3:15 PM Image-guided Spinraza (nusinersen) injection for patients with spinal muscular atrophy: Taking great care for accurate injection and to minimize radiation exposure
Ichiro Ikuta, MD, Yale School of Medicine

3:35 PM Panel Discussion: New Treatment Clinical Programs: Lessons learned with nusinersen and future directions
Nicole LaMarca, DNP, MSN, CPNP, PMHS, Columbia University Medical Center and Morgan Stanley Children's Hospital of New York, New York-Presbyterian Hospital
Jeannie Toops, BSN, Nationwide Children's Hospital
Vamshi Rao, MBBS, Ann and Robert H. Lurie Children's Hospital
Julie Parsons, MD, Children's Hospital Colorado

4:40 PM SMA Care Center Network and Clinical Data Registry
Mary Schroth, MD, Cure SMA

5:00 PM Poster Session / Wine Reception

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