FUTURES

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Involucrarse con CureDuchenne

Una cálida bienvenida del equipo de CureDuchenne y unas palabras de algunas familias campeonas de CureDuchenne sobre cómo lograron el éxito en la recaudación de fondos al unir a su comunidad.

Paul and Laura Heaton

Calves to Cure DMD

Tim and Laura Revell

CureDuchenne Champion Family

Linking the Community to a Cure

CureDuchenne Link is a centralized data hub which combines clinical data, biosamples, and patient reported data for individuals with Duchenne and Becker muscular dystrophy, as well as carriers. Information and samples provided by participants are coded and available for use by approved researchers across the world.

Ana Christensen, MPH

Lead Project Manager, Strategic Solutions

TRiNDS

Next Generation Technology Panel

A brief overview of the rationale behind next generation technology, as well as presentations from the companies in this space. Moderated discussion included.

Erin Brubaker

Chief Operating Officer

Code Bio

Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

Joe McIntosh, MD

Chief Medical Officer

Gennao Bio

Genine Winslow, MSc

CEO & President

Chameleon Biosciences

Pillars of the Early Journey

This session is intended for families/caregivers of children and adolescents with Duchenne. It covers four pillars of the early Duchenne journey: Multidisciplinary Care, Steroids, Nutrition, and Involvement in Clinical Trials, and is followed by a discussion/Q&A session.

Barry Byrne, MD, PhD

Professor and Associate Chair

University of Florida, Department of Pediatrics

Diana Castro, MD

Associate Professor of Pediatrics, Neurology and Neurotherapeutics

University of Texas Southwestern

Kindann Fawcett, PhD

Post Doctoral Fellow

University of Arkansas for Medical Sciences

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

Hawken Miller

Content Strategist

CureDuchenne

Jennifer Shumsky, BSN, RN, CHCO, PACS

Director, Payer Relations

Little Hercules Foundation

Kent Williams, MD

Pediatric Gastroenterologist

Nationwide Children's Hospital

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

Jennifer Ramirez

Executive Director of Special Programs

Belton ISD

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

Vinculando a la comunidad a una cura

CureDuchenne Link es un centro de datos centralizado que combina datos clínicos, biomuestras y datos informados por pacientes para personas con distrofia muscular de Duchenne y Becker, así como portadores. La información y las muestras proporcionadas por los participantes están codificadas y disponibles para su uso por investigadores aprobados en todo el mundo.

Ana Christensen, MPH

Lead Project Manager, Strategic Solutions

TRiNDS