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2017 Connect Conference Resources & Recordings

2017 Connect Conference Presentations

Save the date for PPMD's 2018 Annual Connect Conference!

June 28 - July 1, 2018 in Scottsdale, Arizona

Conference Booklet

PPMD’s 2017 Connect Conference booklet contained over 50 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.

Connect Conference Begins 

  • Taking Care of Our Children, Our Community, Ourselves
    Speaker: Chris Jones
    Play Video

Our New Duchenne Basics – Care, Data, Trials, and Outcomes

Clinical Trial Updates

Care Complications – Going Beyond the More Common Elements of Care

Now What? Advocacy Initiatives Update – Regulatory, Congressional, Patient Preference Research, Access and Reimbursment

Approvals in Duchenne – A Moment of Recognition and Appreciation

Accessing Our First Two US Approved Treatments for Duchenne

  • EXONDYS 51
    Speaker: Ed Kaye, MD
    (Presentation Not Available)
  • EMFLAZA
    Speaker: Stuart Peltz, PhD
    Download PDF

Robotics – Innovation for Our Community 

Moderator: Buddy Cassidy 

Gene Transfer – How to Understand the Best Situation For My Family

  • Speaker: Louise Rodino-Klapac, PhD
    Download PDF
  • Speaker: Eric Olson, PhD; 
    Download PDF
  • Speaker: Katherine Beaverson, MS
    Download PDF
  • Speaker: Carl Morris, PhD
    (Presentation Not Available)

Newly Diagonosed Program Meeting – Getting through the Basics

  • Here We Are
    Speaker: Pat Furlong
    Download PDF
  • Understanding Your Genetic Mutation & What That Means
    Speaker: Kathryn Wagner, MD 
    Download PDF
  • Setting Up Your Teams–Care, Support, & Family
    Speaker: Kathi Kinnett, MSN, CNP
    Download PDF 
  • DuchenneConnect Registry & Other Tools
    Speaker: Ann Martin, MS, CGC
    Download PDF
  • Understanding the Areas of Duchenne Research
    Speaker: Melissa Spencer, PhD
    Download PDF
  • Looking at Clinical Trials
    Speaker: Pat Furlong
    Download PDF
  • Navigating School
    Speaker: Jill Castle, M Ed
    Download PDF

Teens and Young Adult Track 

  • Life Hacks & Technology Adaptations
    Panelists: Alan Chaulet; Jonathan Piacentino; Michael Counterman
    Download PDF
  • Experiencing Depression & Anxiety? It's Not 'Just You' – Do to Thrive
    Co-Facilitators: Buddy Cassidy; Ben Dupree; James Poysky, PhD; Danielle Sheypuk, PhD
    Download PDF
  • Life After Highschool
    Panelists: Colin Werth; Colin Rensch; Jonathan Piacentino; Sean Crosby; Michael Counterman
    Download PDF
  • Navigating Adulthood–Information About Critical Financial Considerations & Benefit Eligibility
    Speakers: Jenny Kean, LCSW; Annie Kennedy
    Download PDF

Wellness Workshops

Siblings and Family

  • What We are Learning About Carriers
    Speakers: Kan Hor, MD; Linda Cripe, MD
    Download PDF

Care Breakout Sessions

Diagnosis – Childhood (Ambulatory)

  • Learning & Behavior 
    Speaker: Molly Colvin, PhD
    Download PDF 
  • Diagnosis, Steroids, & Steriod Alternatives 
    Speaker: Sue Apkon, MD
    Download PDF
  • Exercise, Activity, & Assistance Devices
    Speaker: Claudia Senesac PT, PhD
    Download PDF
  • Hearts
    Speaker: Katheryn Gambetta, MD
    Download PDF
  • Nutrition & Supplements
    Speaker: Zoe Davidson, PhD
    Download PDF
  • Living with Duchenne
    Speaker: Jessica Curran
    Download PDF

Adolescents & Early Teens (Transitioning to Non-Ambulatory) 

  • GI, GU, & Nutrition
    Speaker: Umi Salma Vahanvaty
    Download PDF 
  • Pulmonary
    Speaker: Jane Taylor, MD 
    Download PDF
  • Cardiology
    Speaker: Linda Cripe, MD
    Download PDF
  • Keeping Bones Healthy
    Speaker: Sassi Bowden, MD
    Download PDF
  • Learning Behaviors, & Establishing Independence
    Speaker: James Poysky, PhD
    Download PDF
  • Planning for Transition to Adult Care
    Speaker: Cristina Trout, MSN
    Download PDF

Late Teens & Adults

  • Endocrine & Bone Health
    Speaker: Pransanth Surampudi, MD
    Download PDF 
  • Pulmonary
    Speaker: Lauren Camarda, MD 
    Download PDF
  • Living with Duchenne
    Speaker: Buddy Cassidy 
    Download PDF
  • Cardiac Health
    Speaker: Elizabeth McNally, MD, PhD
    Download PDF
  • SSI, Medicaid, Etc
    Speaker: Anne Goldberger, LCSW
    Download PDF
  • GI & GU
    Speaker: Kent Williams, MD
    Download PDF
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