Resource Library – Page 7 – CureDuchenne

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CureDuchenne Cares Educational Webinar: Reimagining Quality of Life in Duchenne

This webinar, in partnership with the University of Kansas Medical Center, explores topics like achieving milestones, quality of life, and setting goals in families navigating Duchenne muscular dystrophy. The panelists also discuss how to incorporate quality of life metrics into clinical care.

Jeffrey M. Statland, MD

Professor of Neurology

University of Kansas Medical Center

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Kelli Reiling Ott

Clinical Assistant Professor

University of Kansas Medical Center

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Vincent Czerwinski, MD

Medical Student

University of Kansas Medical Center

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Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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CureDuchenne Link Presentation

An overview of CureDuchenne Link.

Joanna Kemp, BSN, RN

Senior Director of Clinical Operations | Director, CureDuchenne Link

CureDuchenne

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Lauren Morgenroth, MS, CGC

Chief Operating Officer

TRiNDS

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Clint & Leslie Porter

CureDuchenne Champion Family

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CureDuchenne Physical Therapy Resources

This resource provides guides to proper massage and aquatic therapy techniques, safe transfers, and stretching routines approved by our CureDuchenne Certified Physical Therapists.

CureDuchenne Certified Physical Therapy Program

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CureDuchenne Research Support and Priorities

Hear from CureDuchenne’s Chief Scientific Advisor on our research support and priorities.

Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

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CureDuchenne Webinar with Wave Life Sciences

Wave will provide an overview of initial clinical trial results for WVE-N531 in individuals with Duchenne muscular dystrophy who are amenable to exon 53 skipping, as well as an overview of the potentially registrational FORWARD-53 study.

Anne-Marie Li-Kwai-Cheung, MChem, MTOPRA, RAPS

Chief Development Officer

Wave Life Sciences

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Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

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Discusión sobre tecnología de próxima generación

¿Que sigue? Discusión sobre tecnología de próxima generación.

Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

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Discussion on the Unique Dynamics in DMD-Affected Home

This resource presents a conversation about family dynamics, communication strategies and how to cope as a family unit navigating a Duchenne diagnosis.

Taylor Berhow, MSW, MPA

Social Worker and Neuro-behavioral Health Specialist

University of Utah Health

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DMD and Post-traumatic Stress

This resource presents information on how to cope with mental heath issues like anxiety and PTSD after a medical emergency.

Paige Lembeck, PhD

Pediatric Psychologist

Yale Child Study Center

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DMD Care Coordination

This resources provides a introduction to the common multidisciplinary care team for Duchenne and their individual functions, as well as tips on coordinating this team-based approach.

John Brandsema, MD

Child Neurologist and Neuromuscular Section Head

Children’s Hospital of Philadelphia

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