Beyond Contractures in Spinal Muscular Atrophy: Identifying Lower-Limb Joint Hypermobility
Published in the Journal of Clinical Medicine, deepening the understanding and the scope of range of motion in SMA: joint hyper-mobility is prevalent in the lower limb and related to function. 

Updated 04/30/24

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Low Bone Mass in Ambulatory Spinal Muscular Atrophy: A Proactive Approach for an Often-Overlooked Impairment

Published in the Journal of Clinical Medicine: Low bone mass is common in individuals with SMA, even if ambulatory. The 6-minute walk test and timed up and go may help identify those at risk. A proactive approach to identification and treatment of low bone mass is needed to reduce fracture risk in SMA.

Updated 02/27/24

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Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy
Published in the Journal of Clinical Medicine, exploring the use of the ACEND to identify the existence of caregiver burden that providers and the SMA community should be aware of. 

Updated 02/27/24

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Development of a Tool to Determine Excellence in the Provision of Physical Therapist Clinical Education

Just published in the Physical Therapy & Rehabilitation Journal, a tool which can be used to determine excellence in the provision of physical therapist clinical education at a clinical site.

Updated 13/05/23

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FREE Professional Development Series

We are excited to announce the quarterly sessions for SMA PTs with the first addressing Therapeutic Interventions in SMA hosted by Dr. Kristin Krosschell and Dr. Sally Dunaway Young on Tuesday September 26 at 7pm EST. More info available here

Updated 9/05/23

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Online Professional Development Activities

In line with our aim to address the need for expertise and resources to provide outstanding care for SMA patients around the world, we will be offering free virtual professional development activities and want your feedback on topics. Please complete our brief survey here.

Updated 6/05/23

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The Challenges and Opportunities of Measuring Fatigue in SMA

Just published in the Journal of Clinical Medicine: a review of the various patient-reported fatigue scales applied in SMA, with the objective of considering the limitations and advantages of each measure.

Updated 5/22/23

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Knowledge Translation for Spinal Muscular Atrophy: The Time Is Now.

An APTA podcast featuring Sally Dunaway Young and Kristin Krosschell, discussing the need for knowledge translation for Spinal Muscular Atrophy resources.

Updated 2/13/23

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Save the Date: Stanford University's 4th Annual Spinal 

Muscular Atrophy Conference.

This year's focus will be on the complexities in filling the gaps of care in the new SMA treatment era and will be held Friday Dec 2nd - Sat Dec 3rd. More info in the link above.

Updated 8/10/22

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Development of a patient-reported perceived fatigability scale for SMA.

Columbia researchers partner with experts at the University of Pittsburgh to develop a scale to measure how patients with SMA experience fatigue with daily activity. Children and adults ages 8+, diagnosed with SMA (any type), and able to understand and complete a rating scale are eligible for this study. All responses are anonymous. 

Updated 8/02/22

 

Competency Based Education (CBE) is the Way of the Future in Educational Design including Physical Therapy

STEP-IN SMA Co-Chair, Dr Jean Fitzpatrick Timmerberg publishes a call to action for future education in Physical Therapy in PTJ: Physical Therapy & Rehabilitation Journal

Updated 5/16/22

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The Workshop Component of the First Competency-Based Continuing Education Program Took Place on March 24-26 in Tarrytown, NY

Twenty-one physical therapists new to SMA joined 8 expert SMA physical therapists for various learning activities including a full day with patients

Updated 4/13/22

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Northwestern Researchers are Working to Understand how Infant's Movement Change as They get Older
Infants under the age of 10 weeks and who were born full-term are eligible for this study

Updated 10/13/21

 

STEP-IN Faculty Publish a Paper on Competencies for SMA Physical Therapists.
Essential competencies for physical therapists​ managing individuals with
spinal muscular atrophy: A delphi study

Updated 07/06/21
 

SMA Physical Therapists Needed for Educational Research Project
A new supervision scale is being proposed for use by SMA physical therapists. This study is currently recruiting participants who supervise PTs working with SMA ​patients.

Updated 07/01/21

Photos and Videos are Requested for Educational Resources
STEP-IN​​​ is building a library of photos and videos for use in educational ​materials and resources for SMA physical therapists.

Updated 07/01/21

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