Beginning the Journey - diagnosed 0-3 years

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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

2023 FUTURES: Friday Keynote – On the Cutting Edge of Research

The science and research-focused day of FUTURES will begin with an engaging keynote panel featuring key opinion leaders who will discuss the successes, learnings, challenges, and future of this disease space.

Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

Emil Kakkis, PhD

CEO & President

Ultragenyx Pharmaceutical

Alison Mcvie-Wylie, PhD

Vice President, Disease Area Executive, DMD

Vertex Pharmaceutical

Dan Levy, MD

VP and Development Head, Rare Neurology Pfizer

Carsten Bönnemann, MD

Chief, Neuromuscular and Neurogenetic Disorders of Childhood Section National Institute of Neurological Disorders and Stroke/NIH

Kevin Flanigan, MD

Director, Center for Gene Therapy Nationwide Children's Hospital

2023 FUTURES: Gene Therapy and Gene Editing Sessions

A brief primer on the gene therapy and gene editing approach to treating Duchenne, and updates from relevant companies in the space. These presentations will be followed by a moderated Q&A opportunity.

Alison Mcvie-Wylie, PhD

Vice President, Disease Area Executive, DMD

Vertex Pharmaceutical

Jahannaz Dastgir, DO

Clinical Development Lead REGENXBIO

Patrick Gonzalez, PhD

Senior Director of Clinical Science Solid Biosciences

Teji Singh, MD

Vice President, Head of Clinical Development Sarepta Therapeutics

Dan Levy, MD

VP and Development Head, Rare Neurology Pfizer