Growth and Transformation - diagnosed 3-6 years

2021 FUTURES: Exon Skipping Panel

Information and updates on exon skipping therapies and research from experts in the Duchenne community.

Ash Dugar, PhD

Senior Vice President, Medical Affairs

Dyne Therapeutics

Kevin Eggan, PhD

Group Vice President, Head of Research and Early Development

BioMarin

Leslie Magnus, MD

Vice President, Medical Affairs

NS Pharma

James McArthur, PhD

President and Chief Executive Officer

PepGen

Lianna Orlando, PhD

Senior Director of Research

CureDuchenne

Mark Stahl, MD, PhD

Senior Medical Director, Clinical Development

Avidity Biosciences

Deanna Tucker, PharmD

Senior Medical Science Liaison

Sarepta Therapeutics

2021 FUTURES: Gene Therapy & Gene Editing Symposium

Information and updates on the gene therapy and gene editing landscape from experts in the field.

**We experienced a technical issue during this session. Please reach out with questions to Futures@CureDuchenne.org if needed.

Beth Belluscio, MD, PhD

Global Clinical Lead, Rare Neurological Disorders

Pfizer

Olivier Danos, PhD

Chief Scientific Officer

REGENXBIO

Emil Kakkis, PhD

CEO & President

Ultragenyx Pharmaceutical

Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

Alison Mcvie-Wylie, PhD

Vice President, Disease Area Executive, DMD

Vertex Pharmaceutical

Carl Morris, PhD

Chief Scientific Officer

Solid Biosciences

Eric Olson, PhD

Chief Scientific Advisor

Vertex Pharmaceuticals

Matthew Pletcher, PhD

Division Head of Gene Therapy Research & Technical Operations

Astellas Gene Therapies

Deanna Tucker, PharmD

Senior Medical Science Liaison

Sarepta Therapeutics

Genine Winslow, MSc

CEO & President

Chameleon Biosciences

2021 FUTURES: Keynote Panel

An inspiring conversation about living in the moment with a rare diagnosis.

Sean Baumstark

Co-Founder

Two Disabled Dudes

Kyle Bryant

Co-Founder

Two Disabled Dudes

Jake Marrazzo

Living with Duchenne

Glenn Olesen

Living with Duchenne

GlennDane Adapt and Conquer

Tanner Rico

Living with Duchenne

2023 FUTURES Breakout Session: Growth and Transformation (ages 9-16)

Let’s discuss:

  • Growing pains and puberty
  • ​Introducing wheelchairs and equipment
  • ​Preparing for a bright future: confidence, independence, and hobbies
  • Neurology concerns
  • Cardiology concerns
  • Pulmonology concerns
  • Managing Mobility

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

Danielle Forrest, OTR, OTD

Occupational Therapist III

Children’s Health and Rehabilitation Services

Dr. Aravindhan Veerapandiyan

Pediatric Neurologist

Arkansas Children's Hospital

Oscar "Hank" Mayer, MD

Medical Director, Pulmonary Function Testing Laboratory Children's Hospital of Philadelphia

Merick Yamada, MD

Pediatric Cardiologist Fetal Care Center Dallas | Neurology and Neuromuscular Care Center

2023 FUTURES Breakout Session: Overcoming Everyday Challenges

How to talk to others about unique challenges like marriage and family dynamics, talking to your kids about Duchenne, and other everyday obstacles that many families in this community face.

Hawken Miller

Content Strategist

CureDuchenne

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

Barry and Luci Nilson

CureDuchenne Champions and Parents

2023 FUTURES: Advancing Care Across the Duchenne Journey Part 1

Relevant healthcare providers discuss the most critical advancements and recommendations in their specialty, and answer questions from the audience.

Dr. Aravindhan Veerapandiyan

Pediatric Neurologist

Arkansas Children's Hospital

Kent Williams, MD

Pediatric Gastroenterologist

Nationwide Children's Hospital

Oscar "Hank" Mayer, MD

Medical Director, Pulmonary Function Testing Laboratory Children's Hospital of Philadelphia

Merick Yamada, MD

Pediatric Cardiologist Fetal Care Center Dallas | Neurology and Neuromuscular Care Center

2023 FUTURES: Advancing Care Across the Duchenne Journey Part 2

Relevant healthcare providers discuss the most critical advancements and recommendations in their specialty, and answer questions from the audience.

Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

Danielle Forrest, OTR, OTD

Occupational Therapist III

Children’s Health and Rehabilitation Services

Angelena Edwards, MD - Speakers

Pediatric Urologist

University of Iowa Stead Family Children's Hospital

Kindann Fawcett, PhD

Post Doctoral Fellow

University of Arkansas for Medical Sciences

Austin Edenfield, ATP

Quantum Product & Technical Education Manager

Pride Mobility

2023 FUTURES: CureDuchenne’s 20th Anniversary: Contributions to the Cure

A warm welcome from the Miller Family, and an informative presentation on CureDuchenne’s timeline of contributions and investments, and how these inform our future vision.

Debra Miller and Paul Miller

Founders

CureDuchenne

Hawken Miller

Content Strategist

CureDuchenne