2018 PPMD Annual Conference Resources & Recordings

JUNE 28 – JUNE 30, 2018 | Scottsdale, AZ

Thank you to everyone who joined us in Scottsdale, AZ for the 2018 Annual Conference! We already can’t wait to see you all next June in Orlando, FL! For now, check out sessions from this year’s conference available for replay and download.

Understanding the Diagnosis of Duchenne

  • Duchenne: Now What?
    Putting Your Plan in Place and Lining Up Resources
    Pat Furlong
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  • Understanding Genetics, Mutation and Other Details
    Stan Nelson, MD
    Download PDF
  • Making A Care Plan and Lining Up Your Team
    Kathi Kinnett
    Download PDF
  • The Value of Physical Therapy
    Tina Duong
    Download PDF
  • Your Data at Work: The Duchenne Registry
    Ann Martin
    Download PDF
  • Talking to Family, Friends and School
    Eric M. Butter, PhD Catherine Butz, PhD
    Download PDF
  • Navigating the Challenges of School
    Denise Gruender, ABC Educational Services Of NC/SC
  • Taking Care of You
    Eric M. Butter, PhD
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Transitions Meeting: Planning for a Lifetime of Happiness – Not just a Happy Childhood

  • Navigating Benefit Eligibility
    Marilyn Morrison, VACCESS
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  • Knowing Your Rights & Responsibilities
    Conrad Reynoldson
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  • Financial Planning
    Michael Wilkinson & John Borchers
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  • Managing & Hiring PCAs
    Buddy Cassidy and Michael Counterman
    Download PDF
  • Panel: Life After High School
    Colin Rensch, Alex Toalson, Ben Dupree, Jenn Bauer, Michael Counterman
    Download PDF

Welcome Address

What we know and don’t know about Duchenne

Moderator: Pat Furlong

  • What do we know about the biology and variability of Duchenne
    Kevin Flanigan, MD
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  • What do we know about Genotype/Phenotype
    Stan Nelson, MD
    Download PDF
  • Impact of care, nutrition, PT and supplements
    Brenda Wong, MD
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Pat’s Pearls – Head, Shoulders, Knees & Toes

Dental Considerations in Duchenne

Digestion and Elimination

Cardiac Health in Duchenne

Moderator: Kathi Kinnett

Clinical Trial Readiness

Moderator: Eddie Smith, MD

Master Protocol: What is it and why are we talking about it?

Duchenne Research Overview: the landscape and the opportunities / Live Polling

Restoring or Replacing Dystrophin

Moderator: Abby Bronson

  • NS Pharma
    Paula Clemens, MD; Hirofumi Komaki, MD
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  • WAVE Life Sciences
    Wendy Erler, VP Patient Adv.
    Download PDF
  • Sarepta Therapeutics
    Doug Ingram, CEO
    Download PDF
  • Summit. Plc
    Michelle Avery, PhD
  • PTC Therapeutics
    Stuart Peltz, CEO
    Download PDF

Studies currently underway in Gene Therapy

Moderator: Tim Cripe, MD, PhD

Duchenne Carriers – Lunch Session

  • Facilitated by Jerry Mendell, MD; Linda Cripe, MD; Jaime Jackson, PhD; May Ling Mah, MD; Kan N. Hor, MD; Pat Furlong
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Inflammation / Live Polling

Moderator: Abby Bronson

Why Advocacy is more important than ever

Today’s Tomorrow – Looking at the future

What is needed to move the needle in the Duchenne landscape? How is PPMD working to make this happen?

Moderator: Pat Furlong

  • Annie Kennedy, Abby Bronson, Jane Larkindale, PhD, Stan Nelson, MD, Kathi Kinnett

Keynote Address

Chris Jones, PPMD Board Member

Improving Muscle Mechanics

Moderator: Abby Bronson

Lifelong physical therapy needs in Duchenne (Lunch Session)

Care Breakout: Diagnosis and Early Childhood

Care Breakout: Childhood

  • NMS, Growth and Puberty
    Eddie Smith, MD, Duke
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  • Genes, Mutations and Supplements
    Stan Nelson, MD, UCLA
    Download PDF
  • Learning and Behavior
    Eric Butter, PhD, Nationwide Children’s
    Download PDF
  • Assessing Educational Plans and Resources
    Karen Carpenter, MS, CRC, LPC, Univ. of Wisconsin Hospitals and Clinics
    Download PDF
  • Pulmonary
    Rich Kravitz, Duke

Care Breakout: Tweens and Teens

Gene Editing – A strategy for the future (CRISPR)

Moderator: Kevin Flanigan, MD

Living Duchenne from different perspectives

Moderator: Pat Furlong

  • Gretchen Egner, Rich Romito, Diane Friar, Brayden Hester, Dee Dee M. Castle, Colin Rench