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2016 Connect Conference Resources & Recordings

2016 Connect Conference Presentations

Save the date for PPMD's 2017 Annual Connect Conference!

June 29, 2017 to July 2, 2017 - Chicago, IL

Conference Booklet

PPMD’s 2016 Connect Conference booklet contained over 40 pages of information on what’s currently going on in Duchenne research & clinical trials. We encourage you to download the digital version of the booklet if you were unable to attend. Please check PPMD's DuchenneConnect site for the most up-to-date versions of these research FAQ sheets.

Presentations

Welcome Address

Speaker: Pat Furlong
Download PDF | Play Video 

Gene Therapy and CRISPR Cas9: Similarities and Differences (Panel)

Moderators: Barry Byrne, MD, PhD and Abby Bronson
Panelists: Xiao Xiao, PhD; Jerry Mendel, MD; Carl Morris, PhD; Jude Samulski, PhD; Eric Olson, PhD
Download PDF - Part 1Part 2 | Play Video

Interpreting Duchenne

Session Chair: Ann Lucas, MS, CGC

The PAAC: Our Duchenne/Becker Landscape through the Lens of Our Teen & Adult Community Members (Panel)

Session Chair: Annie Kennedy
Play Video

Our Community's Voice in Washington: An Update

Speakers: Ryan Fischer & Annie Kennedy
Download PDF | Play Video

PPMD's Carrier Initiative

Session Chair: Pat Furlong

New Tools for Clinical Trials: Parts 1 & 2

  • Panel
    Session Chair: Kathi Kinnett, MSN, CNP
    Speakers: Linda Lowes, PT, PhD; Craig McDonald, MD; Tina Duong, PT, PhD; Krista Vandenborne, PT, PhD 
    Download PDF - (1) Lowes(2) McDonald(3) Duong(4) Vandenborne | Play Video
  • Natural History Data: Learning and Collaboration to Inform Drug Development (Panel)
    Moderator: Stan Nelson, MD
    Panelists: Jane Larkindale (D-RSC), James Signorovich (CTap)

    Download PDF - (1) Signorovich(2) Larkindale | Play Video - coming soon

Trials in Duchenne

Session Chair: Abby Bronson

More Current Clinical Trials in Duchenne

Session Chair: Abby Bronson

Emerging Research & Trials

Session Chair: Linda Cripe, MD

Teens & Adults with Duchenne/Becker

Moderated By: Annie Kennedy

  • It's Not 'Just a Phase': Clinical Depression & Anxiety
    Speakers: James Posyky
    Download PDF
  • ABLE Act Update
    Speakers: Annie Kennedy
    Download PDF
  • Quarterbacking Your Clinical Care Team: Updated Resources & Emerging Tools to Empower You
    Speakers: Kathi Kinnett, MSN, CNP; Ann Lucas, MS, CGC; Christina Trout, MSN, RN
    Download PDF: (1) Lucas; (2) Trout

Care Breakout Sessions

Early Childhood/ Childhood

  • Keeping Lungs Healthy
    Speakers: Hank Meyer, MD
    Download PDF
  • Everybody Poops (but What If They Don't?)
    Speakers: Courtney Shellenbarger, RN, APRN, CPNP
    Download PDF
  • Caring for Little Hearts
    Speakers: Linda Cripe, MD
    Download PDF
  • Managing Behaviors and Learning
    Speakers: Molly Colvin, MD
    Download PDF
  • Living with Duchenne
    Speakers: Christine Piacentino, Mom of an adult son living with Duchenne
    Download PDF

Tweens and Teens

  • Caring for Medium Sized Hearts
    Speakers: Stephanie Wecschler, MD
    Download PDF
  • Staying out of the Hospital
    Speakers: Dan Sheehan, MD
    Download PDF
  • Steroids: Doses, Schedules, Considerations
    Speakers: Brenda Wong, MD
    Download PDF
  • Keeping Bones Healthy
    Speakers: Sasi Bowden, MD
    Download PDF
  • GI and GU and Nutrition
    Speakers: Kent Williams, MD
    Download PDF

Young Adults/ Adults

  • Steroids: Doses, Schedules, Considerations
    Speakers: Brenda Wong, MD
    Download PDF
  • Breathing: What Are My Options?
    Speakers: Jonathan Finder, MD
    Download PDF
  • GI and GU and Nutrition
    Speakers: Kent Williams, MD
    Download PDF
  • Caring for Adult Hearts
    Speakers: Pradeep Mammen, MD
    Download PDF
  • Managing Bone Health
    Speakers: Sasi Bowden, MD
    Download PDF
  • Making an Emergency Plan
    Speakers: Christina Trout, MSN/RN
    Download PDF

Care Initiatives

Session Chair: Kathi Kinnett, MSN, CNP

Platform Presentations from Winning Posters

Session Chair: Kathi Kinnett, MSN, CNP

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