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Spinal Muscular Atrophy:

ONLINE CME*Originally presented live and recordedon December 6-7, 2019.

Current Advances in Treatment and Recommendations for Evaluation and Rehabilitation

A Continuing Medical Education Conference presented by the Department of Neurology, Neuromuscular Division at the Stanford University School of Medicine

Sponsored by the Stanford University School of Medicine

COURSE DIRECTORSJohn W. Day, MD, PhDProfessor of Neurology and Pediatrics (Genetics) and by courtesy, Pathology

Carolina Tesi Rocha, MDClinical Associate Professor, Pediatric Neurology & Neurological Science

GUEST FACULTYTerri Carry, PTPhysical Therapist, Children’s Hospital Colorado

Matthew Civitello, MPTPhysical Therapist, Nemours Children’s Hospital

Basil Darras, MDAssociate Neurologist-in-Chief, Division of Clinical NeurologyDirector, Neuromuscular Center and Spinal Muscular Atrophy ProgramHarvard Medical School

Darryl C. De Vivo, MDSidney Carter Professor of NeurologyProfessor of Pediatrics; Associate Chairman (Neurology) for Pediatric NeurosciencesCo-Director, Center for Motor Neuron Biology and DiseaseColumbia University Irving Medical Center, The Neurological Institute

Richard S. Finkel, MDDivision Chief, Division of Neurology, Department of Pediatrics, Nemours

Allan Glanzman, PT, DPT, PCSClinical Specialist IV in Physical Therapy, Children’s Hospital of Philadelphia

Oscar H. Mayer, MDProfessor of Clinical PediatricsAttending Pulmonologist and Director of the Pulmonary Function Laboratory, Children’s Hospital of Philadelphia

Jacqueline Montes, PT, EdD, NCSAssistant Professor of Rehabilitation and Regenerative Medicine in the Programs for Physical Therapy, Columbia University Irving Medical Center

Leslie Nelson, PT, PhD, OCSAssistant Professor, School of Health Professions, UT Southwestern Medical Center

Julie Parsons, MDProfessor of Clinical Pediatrics and NeurologyHaberfeld Family Endowed Chair in Pediatric Neuromuscular DisordersCo-Director, Neuromuscular Clinic, Children’s Hospital ColoradoUniversity of Colorado School of Medicine

Amy Pasternak, PT, DPT, PCSPhysical Therapist, Department of Physical Therapy and Occupational Therapy Services, Boston Children’s Hospital

Perry B. Shieh, MD, PhDAssociate Professor of Neurology, University of California Los Angeles

SPEAKERSSTANFORD FACULTY MyMy Buu, MD, FAAPClinical Assistant Professor, Pediatrics - Pulmonary Medicine

John W. Day, MD, PhDProfessor of Neurology and Pediatrics (Genetics) and by courtesy, Pathology

Sally Dunaway Young, PT, DPTPhysical Therapist, Division of Neuromuscular Medicine

Tina Duong, MPTPhysical Therapist, Division of Neuromuscular Medicine

Richard Gee, PTPhysical Therapist, Lucile Packard Children’s Hospital

Ava Lin, MDNeuromuscular Fellow, Neurology and Neurological Sciences

Jacinda Sampson, MD, PhDClinical Associate Professor, Neurology and Neurological Sciences

Carly Siskind, MS, LCGCClinical Assistant Professor of Neurology (Affiliated); Genetic Counselor


Connie Wolford, MSN, FNP-BCNurse Practitioner, Stanford Neuromuscular Program

Stanford UniversityStanford Center for Continuing Medical Education1520 Page Mill Road Palo Alto, CA 94304

NON-PROFIT ORGANIZATION

U.S. POSTAGE PAIDPALO ALTO, CAPERMIT NO. 28

Attendee Type

$250

$200

$350

$300

$250

$400

Physicians

Nurses and Allied Health Professionals

Industry

Early Bird Rate After 11/5/19


December 6 – 7, 2019Li Ka Shing Center for Learning & Knowledge, Stanford UniversityStanford, CA


Register online with Visa or Master Card. If you prefer to pay by check or need assistance, please call (650) 497-8554 or email [email protected]. Be sure to register with an email address that you check frequently. Your email address is used for critical infor-mation, including registration confirmation, evaluation, and certificate.

CANCELLATION POLICYCancellations received in writing no less than 20 days before the course will be refunded, less a 20% administrative fee. No refunds will be made on cancellations received after that date. Please send cancellation requests to [email protected] University School of Medicine reserves the right to cancel or postpone this program if necessary; in the event of cancellation, course fees will be fully refunded. We are not responsible for other costs in-curred such as non-refundable airline tickets or hotel penalties.

CONFERENCE LOCATIONLi Ka Shing Center for Learning & Knowledge291 Campus DriveStanford, CA 94305(650) 725-6884

CONTACT INFORMATION For questions about the symposium, please contact Mary Sisney, CME Conference Coordinator at (650) 724-7166 or [email protected]

NEARBY HOTELSSheraton Palo Alto Hotel 625 El Camino RealPalo Alto, California 94301(650) 328-2800

The Westin Palo Alto675 El Camino RealPalo Alto, California 94301(650) 321-4422 Please contact the hotel directly to secure a reservation. Additional hotel options: http://visit.stanford.edu/plan/lodging

VISITING STANFORD UNIVERSITYTo learn more about traveling to Stanford University, please browse visit.stanford.edu. Stanford Center for Continuing Medical Education 1520 Page Mill Road, Palo Alto, CA 94304Phone: (650) 497-8554 ∙ Email: [email protected] ∙ Web: cme.stanford.edu

ACCESSIBILITY STATEMENT Stanford University School of Medicine is committed to ensuring that its programs, services, goods and facilities are accessible to individuals with disabilities as specified under Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Amendments Act of 2008. If you have needs that require special accommodations, including dietary concerns, please contact the CME Conference Coordinator.

REGISTER TODAY!Registration fee includes:• Course Materials • Certificate of Participation• Breakfast and Lunch• Wine & Cheese Reception (No CME)

cme.stanford.edu/spinalmuscularatrophy

STATEMENT OF NEED This two day course is provided to first, teach healthcare providers on the clinical perspective of spinal muscular atrophy (SMA) including the broad phenotypic spec-trum of pediatric and adult patients, evidence of natural history of the disease, new updates to standards of care, clinical outcome measures/standardized assessments, and the influence of therapies both approved and in de-velopment; and second, to support healthcare providers, outside of specialized SMA centers, to manage rehabil-itation programs and evaluate patient progress using validated standardized clinical assessments in SMA.

At the end of this course, participants will have an under-standing of the current advances in treatment as well as recommendations for the evaluation and rehabilitation management in SMA. Attendees will comprehend how to relate the standards of care to clinical practice and assess SMA patients with standardized clinical measures.

TARGET AUDIENCE This is an international program designed for physicians, nurses, advance practice nurses (APNs), professional nurses (RNs) physician assistants, physical therapists, administrators, researchers, social workers, allied health professionals, occupational therapists, speech language pathologists, residents, fellows and medical students specializing in Neurology, Pediatrics, and Neuromuscular Specialties.

LEARNING OBJECTIVES At the conclusion of this activity, participants should be able to:• Summarize the clinical perspectives of Spinal Muscular

Atrophy including disease pathology, phenotypic spectrum, and evidence of natural history.

• Choose and organize suitable rehabilitation programs based on available standards of care recommendations.

• Determine and apply appropriate clinical outcome measures based on age and function with correct administration and scoring of motor performance usingthese common Spinal Muscular Atrophy measures.

ACCREDITATION The Stanford University School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

CREDIT DESIGNATION The Stanford University School of Medicine designates this enduring materials activity for a maximum of 13.75 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

The California Board of Registered Nursing recognizes that Continu-ing Medical Education (CME) is acceptable for meeting RN con-tinuing education requirements as long as the course is certified for AMA PRA Category 1 Credit™ (rn.ca.gov). Nurses will receive a Certificate of Participation following this activity that may be used for license renewal.

FACULTY DISCLOSURE The Stanford University School of Medicine adheres to ACCME Cri-teria, Standards and Policies regarding industry support of continuing medical education. Disclosure of faculty and their commercial relationships will be made prior to the activity.

7:00–8:00 am Registration • Continental Breakfast8:00–8:15 am Welcome and Introductions • John Day, MD, PhD and Carolina Tesi Rocha, MD8:15–9:00 am SMA Pathophysiology, Diagnosis and Clinical Presentations • Darryl C. De Vivo, MD and John Day, MD, PhD9:00–9:45 am Approved Treatment and Upcoming Therapeutic Strategies • Perry Shieh, MD, PhD and Basil Darras, MD9:45–10:15 am Break

10:15–11:00 am Infantile Onset Spinal Muscular Atrophy • Carolina Tesi Rocha, MD and Richard S. Finkel, MD11:00–11:45 am Later Onset Spinal Muscular Atrophy • Julie Parsons, MD and Basil Darras, MD11:45 am–12:30 pm Pre-symptomatic Spinal Muscular Atrophy • Richard S. Finkel, MD and Darryl C. De Vivo, MD12:30–1:30 pm Lunch1:30–2:15 pm Managing Chronic Adults with Spinal Muscular Atrophy • Connie Wolford, MSN, FNP-BC and Jacinda Sampson, MD, PhD2:15–3:00 pm Respiratory Management in Spinal Muscular Atrophy • Oscar Mayer, MD and MyMy Buu, MD, FAAP3:00–3:30 pm Break3:30–4:15 pm The Patient Experience • Moderators: Ava Lin, MD and Carly Siskind, MS, LCGC 4:15–5:00 pm Panel Discussion5:00 pm Social Hour/Wine & Cheese Event (No CME)

FRIDAY, DEC EM B ER 6, 2019

Clinical Phenotypes and Disease Progression

December 6–7, 2019 • 7:00 am – 5:15 pm

REGISTER ONLINEcme.stanford.edu/spinalmuscularatrophy

7:00–8:00 am Registration • Continental Breakfast8:00–8:45 am Clinical Evaluations/Assessments for Spinal Muscular Atrophy • Tina Duong, MPT8:45–9:30 am Updated Rehabilitation Standards of Care • Richard Gee, PT9:30–10:15 am Exercise Recommendations in Spinal Muscular Atrophy • Jacqueline Montes, PT, EdD, NCS10:15–10:30 am Break

3:30–3:45 pm Break3:45–4:15 pm Six-Minute Walk Test • Jacqueline Montes, PT, EdD, NCS and Leslie Nelson, PT, PhD OCS4:15–4:45 pm Community Resource Discussion – Network Initiatives • Sally Dunaway Young, PT, DPT and Jacqueline Montes, PT, EdD4:45 –5:00 pm Group Discussion5:00–5:15 pm Closing Remarks • John Day, MD, PhD and Carolina Tesi Rocha, MD5:15 pm Adjourn

12:30–1:30 pm Lunch

SATURDAY, DECEMBER 7, 2019

1:30–2:25 pm Hammersmith Functional Motor Scale Expanded (HFMSE)Sally Dunaway Young, PT, DPT and Terri Carry, PT

Hammersmith Functional Motor Scale Expanded (HFMSE)Sally Dunaway Young, PT, DPT and Terri Carry, PT

Revised Upper Limb Module (RULM)Amy Pasternak, PT, DPT, PCS and Matthew Civitello, MPT


2:35–3:30 pm

10:30–11:25 amChildren’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)Allan M. Glanzman, PT, DPT and Leslie Nelson, PT, PhD, OCS

Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)Allan M. Glanzman, PT, DPT and Leslie Nelson, PT, PhD, OCS

11:35 am–12:30 pm

Hammersmith Infant Neurological Exam – Part 2 Motor MilestonesBasil Darras, MD and Richard S. Finkel, MD


Breakout Sessions • Evaluations for Non-sitters

Rotate Speakers11:25–11:35 am


Breakout Sessions • Evaluations for Sitters and Walkers


December 6 – 7, 2019Li Ka Shing Center for Learning & Knowledge, Stanford University


A Continuing Medical Education Conference presented by the Department of Neurology, Neuromuscular Division at the Stanford University School of Medicine

Sponsored by the Stanford University School of Medicine

COURSE DIRECTORSJohn W. Day, MD, PhDProfessor of Neurology and Pediatrics (Genetics) and by courtesy, Pathology


GUEST FACULTYTerri Carry, PTPhysical Therapist, Children’s Hospital Colorado

Matthew Civitello, MPTPhysical Therapist, Nemours Children’s Hospital

Basil Darras, MDAssociate Neurologist-in-Chief, Division of Clinical NeurologyDirector, Neuromuscular Center and Spinal Muscular Atrophy ProgramHarvard Medical School

Darryl C. De Vivo, MDSidney Carter Professor of NeurologyProfessor of Pediatrics; Associate Chairman (Neurology) for Pediatric NeurosciencesCo-Director, Center for Motor Neuron Biology and DiseaseColumbia University Irving Medical Center, The Neurological Institute

Richard S. Finkel, MDDivision Chief, Division of Neurology, Department of Pediatrics, Nemours

Allan Glanzman, PT, DPT, PCSClinical Specialist IV in Physical Therapy, Children’s Hospital of Philadelphia

Oscar H. Mayer, MDProfessor of Clinical PediatricsAttending Pulmonologist and Director of the Pulmonary Function Laboratory, Children’s Hospital of Philadelphia

Jacqueline Montes, PT, EdD, NCSAssistant Professor of Rehabilitation and Regenerative Medicine in the Programs for Physical Therapy, Columbia University Irving Medical Center

Leslie Nelson, PT, PhD, OCSAssistant Professor, School of Health Professions, UT Southwestern Medical Center

Julie Parsons, MDProfessor of Clinical Pediatrics and NeurologyHaberfeld Family Endowed Chair in Pediatric Neuromuscular DisordersCo-Director, Neuromuscular Clinic, Children’s Hospital ColoradoUniversity of Colorado School of Medicine

Amy Pasternak, PT, DPT, PCSPhysical Therapist, Department of Physical Therapy and Occupational Therapy Services, Boston Children’s Hospital

Perry B. Shieh, MD, PhDAssociate Professor of Neurology, University of California Los Angeles

SPEAKERSSTANFORD FACULTY MyMy Buu, MD, FAAPClinical Assistant Professor, Pediatrics - Pulmonary Medicine

John W. Day, MD, PhDProfessor of Neurology and Pediatrics (Genetics) and by courtesy, Pathology

Sally Dunaway Young, PT, DPTPhysical Therapist, Division of Neuromuscular Medicine

Tina Duong, MPTPhysical Therapist, Division of Neuromuscular Medicine

Richard Gee, PTPhysical Therapist, Lucile Packard Children’s Hospital

Ava Lin, MDNeuromuscular Fellow, Neurology and Neurological Sciences

Jacinda Sampson, MD, PhDClinical Associate Professor, Neurology and Neurological Sciences

Carly Siskind, MS, LCGCClinical Assistant Professor of Neurology (Affiliated); Genetic Counselor


Connie Wolford, MSN, FNP-BCNurse Practitioner, Stanford Neuromuscular Program

Stanford UniversityStanford Center for Continuing Medical Education1520 Page Mill Road Palo Alto, CA 94304

NON-PROFIT ORGANIZATION

U.S. POSTAGE PAIDPALO ALTO, CAPERMIT NO. 28

Attendee Type

$250

$200

$350

$300

$250

$400

Physicians

Nurses and Allied Health Professionals

Industry

Early Bird Rate After 11/5/19


December 6 – 7, 2019Li Ka Shing Center for Learning & Knowledge, Stanford UniversityStanford, CA


Register online with Visa or Master Card. If you prefer to pay by check or need assistance, please call (650) 497-8554 or email [email protected]. Be sure to register with an email address that you check frequently. Your email address is used for critical infor-mation, including registration confirmation, evaluation, and certificate.

CANCELLATION POLICYCancellations received in writing no less than 20 days before the course will be refunded, less a 20% administrative fee. No refunds will be made on cancellations received after that date. Please send cancellation requests to [email protected] University School of Medicine reserves the right to cancel or postpone this program if necessary; in the event of cancellation, course fees will be fully refunded. We are not responsible for other costs in-curred such as non-refundable airline tickets or hotel penalties.

CONFERENCE LOCATIONLi Ka Shing Center for Learning & Knowledge291 Campus DriveStanford, CA 94305(650) 725-6884

CONTACT INFORMATION For questions about the symposium, please contact Mary Sisney, CME Conference Coordinator at (650) 724-7166 or [email protected]

NEARBY HOTELSSheraton Palo Alto Hotel 625 El Camino RealPalo Alto, California 94301(650) 328-2800

The Westin Palo Alto675 El Camino RealPalo Alto, California 94301(650) 321-4422 Please contact the hotel directly to secure a reservation. Additional hotel options: http://visit.stanford.edu/plan/lodging

VISITING STANFORD UNIVERSITYTo learn more about traveling to Stanford University, please browse visit.stanford.edu. Stanford Center for Continuing Medical Education 1520 Page Mill Road, Palo Alto, CA 94304Phone: (650) 497-8554 ∙ Email: [email protected] ∙ Web: cme.stanford.edu

ACCESSIBILITY STATEMENT Stanford University School of Medicine is committed to ensuring that its programs, services, goods and facilities are accessible to individuals with disabilities as specified under Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Amendments Act of 2008. If you have needs that require special accommodations, including dietary concerns, please contact the CME Conference Coordinator.

REGISTER TODAY!Registration fee includes:• Course Materials • Certificate of Participation• Breakfast and Lunch• Wine & Cheese Reception (No CME)

cme.stanford.edu/spinalmuscularatrophy

STATEMENT OF NEEDThis two day course is provided to first, teach healthcare providers on the clinical perspective of spinal muscular atrophy (SMA) including the broad phenotypic spec-trum of pediatric and adult patients, evidence of natural history of the disease, new updates to standards of care, clinical outcome measures/standardized assessments, and the influence of therapies both approved and in de-velopment; and second, to support healthcare providers, outside of specialized SMA centers, to manage rehabil-itation programs and evaluate patient progress using validated standardized clinical assessments in SMA.



LEARNING OBJECTIVES At the conclusion of this activity, participants shouldbe able to:• Summarize the clinical perspectives of Spinal Muscular Atrophy including disease pathology, phenotypic spectrum, and evidence of natural history.


• Determine and apply appropriate clinical outcome measures based on age and function with correct administration and scoring of motor performance using these common Spinal Muscular Atrophy measures.

ACCREDITATION The Stanford University School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME)to provide continuing medical education for physicians.

Stanford Health Care Department of Rehabilitation is an approvedprovider for physical therapy, occupational therapy, and speechlanguage pathology for courses that meet the requirements setforth by the respective Boards.

CREDIT DESIGNATIONThis course is approved for SLP (6.75 credits for Friday attendance), approved for PT and OT 14 credits for completion of entirety of course.

The Stanford University School of Medicine designates this live ac-tivity for a maximum of 14 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.


FACULTY DISCLOSURE The Stanford University School of Medicine adheres to ACCME Cri-teria, Standards and Policies regarding industry support of continu-ing medical education. Disclosure of faculty and their commercialrelationships will be made prior to the activity.

No CME 38 Minutes53 Minutes

Welcome and Introductions • John Day, MD, PhD and Carolina Tesi Rocha, MDSMA Pathophysiology, Diagnosis and Clinical Presentations • Darryl C. De Vivo, MD and John Day, MD, PhD Approved Treatment and Upcoming Therapeutic Strategies • Perry Shieh, MD, PhD and Basil Darras, MD

45 Minutes39 Minutes45 Minutes45 Minutes46 Minutes50 Minutes35 Minutes

Infantile Onset Spinal Muscular Atrophy • Carolina Tesi Rocha, MD and Richard S. Finkel, MDLater Onset Spinal Muscular Atrophy • Julie Parsons, MD and Basil Darras, MDPre-symptomatic Spinal Muscular Atrophy • Richard S. Finkel, MD and Darryl C. De Vivo, MDManaging Chronic Adults with Spinal Muscular Atrophy • Connie Wolford, MSN, FNP-BC and Jacinda Sampson, MD, PhD Respiratory Management in Spinal Muscular Atrophy • Oscar Mayer, MD and MyMy Buu, MD, FAAPThe Patient Experience • Moderators: Ava Lin, MD and Carly Siskind, MS, LCGC Panel Discussion

Day 1 | Recorded Friday, December 6 , 201 9


PROGRAM


7:00–8:00 am Registration • Continental Breakfast8:00–8:45 am Clinical Evaluations/Assessments for Spinal Muscular Atrophy • Tina Duong, MPT8:45–9:30 am Updated Rehabilitation Standards of Care • Richard Gee, PT9:30–10:15 am Exercise Recommendations in Spinal Muscular Atrophy • Jacqueline Montes, PT, EdD, NCS10:15–10:30 am Break

3:30–3:45 pm Break3:45–4:15 pm Six-Minute Walk Test • Jacqueline Montes, PT, EdD, NCS and Leslie Nelson, PT, PhD OCS4:15–4:45 pm Community Resource Discussion – Network Initiatives • Sally Dunaway Young, PT, DPT and Jacqueline Montes, PT, EdD4:45 –5:00 pm Group Discussion5:00–5:15 pm Closing Remarks • John Day, MD, PhD and Carolina Tesi Rocha, MD5:15 pm Adjourn

12:30–1:30 pm Lunch

SAT UR DAY, D E CE MB E R 7 , 2 0 1 9

1:30–2:25 pm Hammersmith Functional Motor Scale Expanded (HFMSE)Sally Dunaway Young, PT, DPT and Terri Carry, PT

Hammersmith Functional Motor Scale Expanded (HFMSE)Sally Dunaway Young, PT, DPT and Terri Carry, PT



2:35–3:30 pm

10:30–11:25 amChildren’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)Allan M. Glanzman, PT, DPT and Leslie Nelson, PT, PhD, OCS

Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)Allan M. Glanzman, PT, DPT and Leslie Nelson, PT, PhD, OCS

11:35 am–12:30 pm








STATEMENT OF NEEDThis two day course is provided to first, teach healthcare providers on the clinical perspective of spinal muscular atrophy (SMA) including the broad phenotypic spec-trum of pediatric and adult patients, evidence of natural history of the disease, new updates to standards of care, clinical outcome measures/standardized assessments, and the influence of therapies both approved and in de-velopment; and second, to support healthcare providers, outside of specialized SMA centers, to manage rehabil-itation programs and evaluate patient progress using validated standardized clinical assessments in SMA.



LEARNING OBJECTIVES At the conclusion of this activity, participants shouldbe able to:• Summarize the clinical perspectives of Spinal Muscular Atrophy including disease pathology, phenotypic spectrum, and evidence of natural history.


• Determine and apply appropriate clinical outcome measures based on age and function with correct administration and scoring of motor performance using these common Spinal Muscular Atrophy measures.

ACCREDITATION The Stanford University School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME)to provide continuing medical education for physicians.

Stanford Health Care Department of Rehabilitation is an approvedprovider for physical therapy, occupational therapy, and speechlanguage pathology for courses that meet the requirements setforth by the respective Boards.

CREDIT DESIGNATIONThis course is approved for SLP (6.75 credits for Friday attendance), approved for PT and OT 14 credits for completion of entirety of course.

The Stanford University School of Medicine designates this live ac-tivity for a maximum of 14 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.


FACULTY DISCLOSURE The Stanford University School of Medicine adheres to ACCME Cri-teria, Standards and Policies regarding industry support of continu-ing medical education. Disclosure of faculty and their commercialrelationships will be made prior to the activity.

7:00–8:00 am Registration • Continental Breakfast8:00–8:15 am Welcome and Introductions • John Day, MD, PhD and Carolina Tesi Rocha, MD8:15–9:00 am SMA Pathophysiology, Diagnosis and Clinical Presentations • Darryl C. De Vivo, MD and John Day, MD, PhD9:00–9:45 am Approved Treatment and Upcoming Therapeutic Strategies • Perry Shieh, MD, PhD and Basil Darras, MD9:45–10:15 am Break

10:15–11:00 am Infantile Onset Spinal Muscular Atrophy • Carolina Tesi Rocha, MD and Richard S. Finkel, MD11:00–11:45 am Later Onset Spinal Muscular Atrophy • Julie Parsons, MD and Basil Darras, MD11:45 am–12:30 pm Pre-symptomatic Spinal Muscular Atrophy • Richard S. Finkel, MD and Darryl C. De Vivo, MD12:30–1:30 pm Lunch1:30–2:15 pm Managing Chronic Adults with Spinal Muscular Atrophy • Connie Wolford, MSN, FNP-BC and Jacinda Sampson, MD, PhD2:15–3:00 pm Respiratory Management in Spinal Muscular Atrophy • Oscar Mayer, MD and MyMy Buu, MD, FAAP3:00–3:30 pm Break3:30–4:15 pm The Patient Experience • Moderators: Ava Lin, MD and Carly Siskind, MS, LCGC 4:15–5:00 pm Panel Discussion5:00 pm Social Hour/Wine & Cheese Event (No CME)

FRIDAY, DEC EM B ER 6, 2019


December 6–7, 2019 • 7:00 am – 5:15 pm 43 Minutes44 Minutes39 Minutes

Welcome Day 2Clinical Evaluations/Assessments for Spinal Muscular Atrophy • Tina Duong, MPT Updated Rehabilitation Standards of Care • Richard Gee, PTExercise Recommendations in Spinal Muscular Atrophy • Jacqueline Montes, PT, EdD, NCS

32 Minutes 27 Minutes No CME

Six-Minute Walk Test • Jacqueline Montes, PT, EdD, NCS and Leslie Nelson, PT, PhD OCSCommunity Resource Discussion – Network Initiatives • Sally Dunaway Young, PT, DPT and Jacqueline Montes, PT, EdD Closing Remarks • John Day, MD, PhD and Carolina Tesi Rocha, MD

Day 1 | Recorded Saturday December 7 , 2 0 1 9

61 MinutesHammersmith Functional Motor Scale Expanded (HFMSE) Sally Dunaway Young, PT, DPT and Terri Carry, PT

Revised Upper Limb Module (RULM) Amy Pasternak, PT, DPT, PCS and Matthew Civitello, MPT57 Minutes

43 MinutesChildren’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)Allan M. Glanzman, PT, DPT and Leslie Nelson, PT, PhD, OCS

44 MinutesHammersmith Infant Neurological Exam – Part 2 Motor MilestonesBasil Darras, MD and Richard S. Finkel, MD




NO CME

speaers - cloudcme · 675 el camino real stanford university school of medicine sponsored by the...

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