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Pillars of the Transition Journey

This session is intended for families/caregivers of teens and adults with Duchenne. It covers four pillars of the transitional Duchenne journey: Continuity of Care, GI-related Care, Medical Privacy, and School/Career/Hobbies, and is followed by a discussion/Q&A session.

Pradeep P.A. Mammen, MD, FACC, FAHA

Associate Professor of Medicine and Co-Director

Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center, Director for Translational Research for the Advanced Heart Failure and Transplant Cardiology Program, UT Southwestern Medical Center

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Hawken Miller

Content Strategist

CureDuchenne

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Jennifer Shumsky, BSN, RN, CHCO, PACS

Director, Payer Relations

Little Hercules Foundation

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Kent Williams, MD

Pediatric Gastroenterologist

Nationwide Children's Hospital

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

REGENXBIO

RGX-202:  REGENXBIO’s investigational gene therapy for the treatment of Duchenne Muscular Dystrophy presented by:  Johannaz (Naz) Dastgir, DO, Senior Director, Clinical Development Lead at REGENXBIO

A program update on RGX-202, REGENXBIO’s investigational gene therapy program for the treatment of Duchenne.

Contact: Duchenne@regenxbio.com or patientadvocacy@regenxbio.com

Johannaz Dastgir, DO

Senior Director, Clinical Development Lead

REGENXBIO

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Success at School

An interactive presentation focused on defining and building your team at school, addressing the nuances of an IEP or 504 plan for an individual with Duchenne, and a role-playing exercise on how to effectively communicate your family’s needs in a school meeting.

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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Jennifer Ramirez

Executive Director of Special Programs

Belton ISD

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Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

The Benefits of Corticosteroids Along the Duchenne Journey

CureDuchenne is joined by Dr. Aravindhan Veerapandiyan, a Pediatric Neurologist from Arkansas Children’s Hospital, and Sheryl Marrazzo, a mother, grandmother and advocate in the Duchenne Community, for a 1-hour webinar on corticosteroids. This webinar discusses the role of corticosteroids in the Duchenne standards of care, highlights the effects of steroids after loss of ambulation, and includes a discussion on how corticosteroids play a role in the family unit over time.

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Dr. Aravindhan Veerapandiyan

Pediatric Neurologist

Arkansas Children's Hospital

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years