Jointly sponsored by: University of Wisconsin School of Medicine and Public Health Office of Continuing Professional Development in Medicine and Public Health, Department of Pediatrics and Families of SMA.
Course Overview This activity will focus on the diagnosis of infants and children with neuromuscular weakness, clinical application of care standards to individuals with Spinal Muscular Atrophy, and discussion of pathophysiology and therapeutic strategies for intervention. Both regional and national expert faculty will provide didactic presentations and host panel discussions.
Objectives • Identify when to refer children with delayed motor milestones for further evaluation. • Apply best practices to the coordinated care of individuals with Spinal Muscular Atrophy. • Discuss and promote care coordination between the community and specialty care for children with Spinal Muscular Atrophy.
Purpose The purpose of this activity is to enable learners to identify their roles in effectively diagnosing, treating, and managing the care of patients with Spinal Muscular Atrophy.
Target Audience and Scope of Practice This activity is intended for primary care providers including physicians, who identify and care for children affected by Spinal Muscular Atrophy, nurse practitioners, physician assistants and nurses, pediatric and adult specialists including neurologists, pulmonologists, rehabilitation medicine, orthopedic surgery, palliative care, physical and occupational therapists, speech and language pathologists, nutritionists, social workers, respiratory therapists and trainees in the above disciplines.
CME Agenda 7:00 am - 8:00 am Registration/Breakfast 8:00 am Welcome and Overview – Mary Schroth, MD 8:15 am Evaluation of the Floppy Infant and Toddler with Delayed Milestones – Garey Noritz, MD 9:00 am Overview of SMA – John Kissel, MD 9:30 am Break 9:45 am SMN Biology and Therapeutic Strategies– Charlotte Sumner, MD 10:15 am Medical Home Models for the Child and Family with SMA – Garey Noritz, MD and Rob Graham, MD 10:45 am Navigating Choices for Care – Vanessa Battista, RN, MS, CPNP, CCRC 11:15 am Top 10 Hot Topics in SMA Nutrition – Rebecca Hurst, MS, RD, CD and Erin Seffrood, MS, RD, CSP 12:30 pm Lunch and Poster Session with Researchers
Breakout Sessions: A. Cardiopulmonary Care – Richard Shell, MD and Richard Kravitz, MD B. Orthopedic Care – Brian Snyder, MD C. Breathing – Mary Schroth, MD D. Rehab Therapy Recommendations – (Mobility/Flexibilty by SMA type) Kristin Krosschell, PT, MA, PCS; Robert Rinaldi, MD; and Leslie Nelson, PT, MPT, OCS
CME Scholarships Thanks to generous funding from Sweet Baby Zane, The Miller McNeil Woodruff Foundation and the Pennington Foundation, medical providers across the country can apply for a scholarship to attend the Families of SMA 2014 Continuing Medical Education (CME) Conference in National Harbor, MD at the Gaylord National Resort on Friday, June 13th.
The scholarships will cover registration fees, travel costs and lodging for two night’s hotel so medical professionals can attend this one day event. All guidelines and reimbursement information will be sent to scholarship recipients upon receiving notification of their scholarships.
Conference Planning Committee: Mary K. Schroth, MD, Chair Barbara Anderson, MS Vanessa Battista, RN, MS, CPNP, CCRC Jessica Clark Robert Graham, MD Amy Kephart, MPH John Kissel, MD Richard Kravitz, MD Colleen McCarthy, O’Toole Garey Noritz, MD Richard Shell, MD
Families of SMA Medical Advisory Council Mary K. Schroth, MD Pediatric Pulmonology Families of SMA, Medical Advisory Council Chair, American Family Children’s Hospital, University of Wisconsin School of Medicine and Public Health
Garey Noritz, MD Pediatrics, Internal Medicine Nationwide Children’s Hospital, The Ohio State University
Rob Graham, MD Critical Care Medicine Children’s Hospital Boston, Harvard Medical School
Susan Apkon, MD Pediatric Rehabilitation Medicine Seattle Children’s, University of Washington School of Medicine
Brian Snyder, MD, PhD Pediatric Orthopedic Surgery Children’s Hospital Boston, Harvard Medical School
Richard Shell, MD Pediatric Pulmonology Nationwide Children’s Hospital, The Ohio State University
Vanessa Battista, RN, MS, CPNP, CCRC Pediatric Nursing Children’s Hospital of Philadelphia
John Grayhack, MD Pediatric Orthopedic Surgery Northwestern University Feinberg School of Medicine
Kristin J. Krosschell, PT, DPT, MA, PCS Physical Therapy and Human Movement Sciences Northwestern University Feinberg School of Medicine
Richard Kravitz, MD Pediatric Pulmonology Duke University Medical Center, Duke University School of Medicine
Karen Patterson, MS, PT, PCS Physical Therapy University of Wisconsin School of Medicine and Public Health
Tom Crawford, MD Pediatric Neurology Johns Hopkins Hospital
Erin Seffrood, MS, RD, CSP, CD Pediatric Dietitian American Family Children's Hospital
Richard Finkel, MD Pediatric Neurology Nemours Children's Hospital, Orlando, FL
John Kissel, MD Neurology The Ohio State University, Wexner Medical Center
Kenneth Silver, MD Pediatric Neurology University of Chicago Comer Children’s Hospital
Albert Freedman, PhD Child & Adolescent Psychologist Independent Practice West Chester, Pennsylvania
About Spinal Muscular Atrophy (SMA) Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. • SMA is one of the most prevalent genetic disorders • One in every 6,000 babies is born with SMA • SMA can strike anyone of any age, race or gender • One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA • 8 million Americans are carriers
About Families of SMA Families of Spinal Muscular Atrophy (FSMA) is dedicated to creating a treatment and cure by: funding and advancing a comprehensive research program; supporting SMA families through networking, information and services; improving care for all SMA patients; educating health professionals and the public about SMA; Enlisting government support for SMA; and embracing all touched by SMA in a caring community. FSMA’s vision is a world where Spinal Muscular Atrophy is treatable and curable.
Families of SMA funds and directs the leading SMA research programs. Successful results and progress from basic research to drug discovery programs to clinical trials provide real hope for families and patients. Families of SMA is a non-profit, 501(c)3 tax exempt organization with 31 Chapters throughout the United States and over 85,000 members and supporters.
Along with funding and directing leading SMA research, Families of SMA provides core resources and assistance that help families navigate life with SMA. Families of SMA gives a stable, unbiased platform for families to live active, engaged and hopeful lives. These resources include: Information provided to all newly diagnosed families to understand and manage the disease; Care packages of toys that have been recommended for SMA children; A medical equipment pool available to families at no cost; The Annual SMA Conference; and the nation’s largest gathering of those affected by SMA and leading researchers from around the world.
The University of Wisconsin provides equal opportunities in employment and programming, including Title IX requirements. The University of Wisconsin School of Medicine and Public Health fully complies with the legal requirements of the ADA and the rules and regulations thereof. If any participant in this educational activity is in need of accommodations, please contact Barbara Anderson at 608/263-8542.
Statement of Need SMA is a rare life threatening disorder that affects 1 in 6000 live births. Children with SMA are not diagnosed or referred for diagnosis in a timely way due to a lack of primary care provider lack of knowledge related to current best practices for diagnosis and management of these patients.
Elements of Competence This CME activity has been designed to change learner knowledge and performance and focuses on the American Board of Medical Specialties areas of patient care and procedural skills, medical knowledge, practice-based learning and improvement, interpersonal and communication skills, professionalism and systems-based practice.
Accreditation Statement This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of the University of Wisconsin School of Medicine and Public Health and the Families of SMA. The University of Wisconsin School of Medicine and Public Health is accredited by the ACCME to provide continuing medical education for physicians.
Credit Designation Statement The University of Wisconsin School of Medicine and Public Health designates this live activity for a maximum of 7 AMA PRA Category 1 Credit(s)TM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
American Academy of Family Physicians Continuing Education Statement This Live activity, Interdisciplinary Perspectives on Spinal Muscular Atrophy: Defining Your Role, with a beginning date of 06/13/2014, has been reviewed and is acceptable for up to 7.00 Prescribed credit(s) by the American Academy of Family Physicians. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Nursing Continuing Education This activity has been submitted to WNA CEAP for approval to award contact hours. Wisconsin Nurses Association is accredited as an approver of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation.
Continuing Education Units The University of Wisconsin - Madison, as a member of the University Continuing Education Association (UCEA), authorizes this program for 0.7continuing education units (CEUs) or 7 hours.
Policy on Faculty and Sponsor Disclosure It is the policy of the University of Wisconsin School of Medicine and Public Health that the faculty, authors, planners and other persons who may influence the content of this CME activity disclose all relevant financial relationships with commercial interests in order to allow CME staff to identify and resolve any potential conflicts of interest. Faculty must also disclose any planned discussion of unlabeled/unapproved uses of drugs or devices during their presentation(s). Detailed disclosures will be made in the activity handout materials.