by: Parent Project Muscular Dystrophy
PPMD’s 2022 Annual Conference: Full Agenda Available Now!
We are excited to unveil the full agenda for PPMD’s 2022 Annual Conference, June 23-26 in Scottsdale, AZ! Whether you choose to join us in-person or virtually this year, we look forward to coming together as a community to connect with each other and learn the latest advances in research and care, with an incredible agenda featuring:
- Presentations and discussion panels on the latest research, clinical trials, approved therapies, care initiatives, and quality of life issues.
- In-depth presentations and discussion panels on Gene Therapy and next steps in the field.
- Breakout sessions according to age, covering multiple aspects of care, as well as new breakout sessions for Becker families.
- One-on-one private appointments with Behavioral Therapists, Physical Therapists, Genetic Counselors, and other specialists.
- The Duchenne Cardiac Care Town Hall, part of an extended 3-hour session dedicated specifically to Duchenne hearts.
- Special programming for Newly Diagnosed Families.
- A dedicated track for Teens and Adults with Duchenne/Becker, as well as Siblings.
- Fun and interactive Kids Track sessions.
- Our first-ever ‘Knight Hacks’ Community Poster Contest, showcasing the ingenuity of our amazing community in memory of Angela Knight (learn how to participate).
- A robust Resource Fair and Scientific Poster Session.
- Dive-In Movie Night and other social events.
- And so much more!
PPMD’s 2022 Annual Conference Agenda
Wednesday, June 22
All times in Pacific Time
| Live Streaming? | Time | Session | Track / Meeting |
|---|---|---|---|
| 12:00 PM | NM Coordinator Pre-Con | NM Coordinator Pre-Con | |
| 2:00 PM - 5:00 PM | Newly Diagnosed Families: Welcome | Newly Diagnosed Families | |
| 5:00 PM - 6:00 PM | Connect Coordinator Meeting | Connect Coordinators | |
| 6:30 PM - 8:30 PM | Newly Diagnosed Families: Social | Newly Diagnosed Families | |
| 6:30 PM - 9:30 PM | Teens & Adults Track: Social | Teens & Adults Track |
Thursday, June 23
All times in Pacific Time
| Live Streaming? | Time | Session | Track / Meeting |
|---|---|---|---|
| 7:00 AM - 12:00 PM | NM Coordinator Pre-Con
| NM Coordinator Pre-Con | |
| 8:00 AM - 8:00 PM | Registration Open | ||
| 8:00 AM - 9:30 AM | Breakfast Available | ||
| 9:00 AM - 10:30 AM | Kids Track: Morning Session | Kids Track | |
| STREAM | 9:30 AM - 12:00 PM | Duchenne 101
| Newly Diagnosed Families & Open to General Attendees |
| STREAM | 9:00 AM - 11:05 AM | Duchenne Cardiac Care - Part 1: Learnings from PPMD's Cardiac Care Meeting
| |
| STREAM | 11:00 AM - 1:00 PM | Teens & Adults Track: Power of Us Sessions
| Teens & Adults Track |
| STREAM | 11:05 AM - 12:30 PM | Duchenne Cardiac Care - Part 2: Community Town Hall | |
| 12:00 PM - 2:00 PM | Lunch | ||
| 2:00 PM | MAIN CONFERENCE BEGINS | ||
| STREAM | 2:00 PM - 2:30 PM | OPENING ADDRESS: Welcome Back - Pat Furlong, PPMD President and CEO | |
| STREAM | 2:30 PM - 3:10 PM | The Duchenne Landscape: Understanding Where We Have Come From and How We Are Moving Forward - Kevin Flanigan, MD, PhD (Nationwide Children's Hospital) | |
| 2:30 PM - 4:30 PM | Kids Track: Afternoon Session | Kids Track | |
| STREAM | 3:15 PM - 3:45 PM | KEYNOTE: Lessons in Duchenne - Michael Binks, MD (Pfizer, Inc.) | |
| STREAM | 3:15 PM - 4:30 PM | Sibs Track: Welcome & Getting to Know Each Other | Sibs Track |
| STREAM | 3:45 PM - 4:10 PM | New Learnings on Natural History - Craig McDonald, MD (UC Davis) | |
| 4:10 PM - 4:30 PM | Break | ||
| STREAM | 4:30 PM - 4:50 PM | The Landscape of Cardiac Care: Emerging Therapies on the Horizon - Chet Villa, MD (Cincinnati Children's Hospital Medical Center) | |
| 4:45 PM - 6:15 PM | Teens & Adults Track: Special Sessions
| Teens & Adults Track | |
| STREAM | 4:50 PM - 5:15 PM | Duchenne Siblings: What We Want You to Know - Dylan Malone, Abbie Killian, Kat Piacentino (PPMD) | |
| 5:15 PM - 6:15 PM | Parent Panel: Things I’d Like My Doctor to Know Moderators: Mena Scavina, Pat Furlong, Rachel Callander Panelists: Kate Vanderweele, Amy Ridolphi, Jennifer Schwartz, Rhiannon Hubbard, Brian Denger | ||
| STREAM | 4:45 PM - 6:30 PM | Clinical Care for Becker Muscular Dystrophy Moderators: Eddie Smith, MD (Duke Children's Hospital) and Rachel Schrader, MS, APRN, CPNP-PC (PPMD)
| Becker Breakout Session |
| 6:15 PM - 9:00 PM | Welcome Reception with Poster Session, Resource Fair, and Knight Hacks Poster Contest | ||
| 7:00 PM - 9:00 PM | Sibs Track: Social | Sibs Track |
Friday, June 24
All times in Pacific Time
| Live Streaming? | Time | Session | Track |
|---|---|---|---|
| 7:15 AM - 8:00 AM | Breakfast Available | ||
| STREAM | 8:00 AM - 8:10 AM | Welcome and Housekeeping | |
| STREAM | 8:10 AM - 8:30 AM | Gene Therapy Era: What We Know - Tim Cripe, MD, PhD, FAAP (Nationwide Children's Hospital) | |
| STREAM | 8:30 AM - 10:00 AM | Gene Therapy Approaches to Replace or Restore Dystrophin
| |
| 10:00 AM - 10:20 AM | Break | ||
| STREAM | 8:45 AM - 10:30 AM | Sibs Track: Power of Us Sessions - Kat Piacentino (PPMD), Dylan Malone, Abbie Killian | Sibs Track |
| STREAM | 8:45 AM - 10:00 AM | Caring for the Caregivers of Teens and Adults Living With Duchenne Moderator: Ellen Wagner (PPMD) Panelists: Stan Nelson, MD (UCLA); Natalie Truba, PhD (Nationwide Children's Hospital); Sue Apkon, MD (Children's Hospital Colorado); Colleen Labbadia (Parent) | |
| STREAM | 10:20 AM - 11:20 AM | Brain and Behavior
| |
| STREAM | 11:00 AM - 12:00 PM | Teens & Adults Track: Receiving Care
| Teens & Adults Track |
| STREAM | 11:20 AM - 12:10 PM | Strategies for Mitigating Inflammation and Fibrosis
| |
| STREAM | 12:10 PM - 12:30 PM | Late-Breaking News: Session #1 | |
| 12:30 PM - 1:30 PM | Lunch | ||
| 12:30 PM - 1:30 PM | Lunch Session: An open discussion with a gastrointestinal specialist. What would you want to know about the INs and OUTs of muscular dystrophy? - Rob Benjamin, MD and Kent Williams, MD | ||
| 1:30 PM - 3:00 PM | Kids Track | Kids Track | |
| STREAM | 1:30 PM - 3:00 PM | CARE BREAKOUT SESSION #1: Early Childhood Moderator: Rachel Schrader, MS, APRN, CPNP-PC (PPMD)
| |
| STREAM | 1:30 PM - 3:00 PM | CARE BREAKOUT SESSION #2: Late Childhood/Tweens Moderator: Ellen Wagner (PPMD)
| |
| STREAM | 1:30 PM - 3:00 PM | CARE BREAKOUT SESSION #3: Teens/Adult Moderator: Alexis Hazlett, MSN, RN, CPN (PPMD)
| |
| 3:00 PM - 3:15 PM | Break | ||
| STREAM | 3:15 PM - 4:30 PM | Sibs Track: How Do We Talk About Duchenne - Kimberly Mahr, MSc, LPC, NCC, CCTP | Sibs Track |
| STREAM | 3:15 PM - 4:15 PM | KEYNOTE: Life, Love and Awesomeness: The Impact and Implications of Language - Rachel Callander | |
| 3:30 PM - 5:00 PM | Tween Meet Up - Pat Moeschen | Tweens | |
| STREAM | 4:15 PM - 5:45 PM | Restoring Dystrophin via Exon Skipping Strategies
| |
| 5:45 PM - 6:15 PM | MOVIE: Living Duchenne in Iceland | ||
| STREAM | 4:45 PM - 6:15 PM | Emerging Therapies for Becker Muscular Dystrophy
| Becker Breakout Session |
| 6:15 PM - 9:00 PM | Teens & Adults Track: Late Night Sessions
| Teens & Adults Track | |
| 6:15 PM | Swim Meet Up | ||
| 7:00 PM | Dinner | ||
| 8:15 PM | Movie Night |
Saturday, June 25
All times in Pacific Time
| Live Streaming? | Time | Session | Track |
|---|---|---|---|
| 7:00 AM - 8:30 AM | Breakfast Available | ||
| STREAM | 8:00 AM - 8:15 AM | Here Is What I Hear - Rachel Callander | |
| STREAM | 8:15 AM - 8:45 AM | The Future of Genetic Therapies - Annemieke Aartsma-Rus, PhD (University of Leiden) | |
| STREAM | 8:45 AM - 9:45 AM | Emergency Care Panel
| |
| STREAM | 9:45 AM - 10:30 AM | Plenary Session with Chris Jones | |
| 10:30 AM - 11:00 AM | Break | ||
| STREAM | 11:00 AM - 12:00 PM | Novel Approaches for Combatting Duchenne
| |
| 10:45 AM - 12:30 PM | Kids Track: Morning Session | Kids Track | |
| 12:00 PM - 12:05 PM | Dance Party | ||
| 12:00 PM - 1:00 PM | Lunch | ||
| 12:00 PM - 1:30 PM | PTC Therapeutics' Ice Cream Social | ||
| 12:00 PM - 1:00 PM | Grandparents Lunch | ||
| STREAM | 1:00 PM - 2:00 PM | LEARNING & BEHAVIOR BREAKOUT SESSION #1: Early Childhood Moderator: Alexis Hazlett, MSN, RN, CPN (PPMD)
| |
| STREAM | 1:00 PM - 2:00 PM | LEARNING & BEHAVIOR BREAKOUT SESSION #2: Late Childhood/Tweens Moderator: Ellen Wagner (PPMD)
| |
| STREAM | 1:00 PM - 2:00 PM | LEARNING & BEHAVIOR BREAKOUT SESSION #3: Teens/Adult Moderator: Pat Moeschen (PPMD)
| |
| 2:00 PM - 2:15 PM | Break | ||
| STREAM | 2:15 PM - 3:15 PM | KEYNOTE: Destigmatizing Disability - Shane & Hannah Burcaw | |
| 3:00 PM - 4:30 PM | Kids Track: Morning Session | Kids Track | |
| STREAM | 3:15 PM - 4:30 PM | Facilitating Independence: A Panel Discussion Moderators: Shane Burcaw, Pat Furlong, Pat Moeschen
| |
| STREAM | 4:15 PM - 6:15 PM | Teens & Adults Track: Power of Us Sessions
| Teens & Adults Track |
| STREAM | 4:15 PM - 6:15 PM | Sibs Track - Kat Piacentino (PPMD), Dylan Malone, Abbie Killian | Sibs Track |
| 4:30 PM - 4:45 PM | Break | ||
| STREAM | 4:45 PM - 5:05 PM | Late-Breaking News: Session #2 | |
| STREAM | 5:05 PM - 5:25 PM | Late-Breaking News: Session #3 | |
| STREAM | 5:25 PM - 6:15 PM | Looking Ahead to Combination Therapies: Once You Have Dystrophin, What Is Next? | |
| 6:30 PM - 8:30 PM | End of Conference: Reception & Social |
Sunday, June 26
All times in Pacific Time
| Live Streaming? | Time | Session |
|---|---|---|
| 8:00 AM - 10:00 AM | Breakfast Available | |
| 10:00 AM onward | Choose Your Own Adventure End the conference with activities that bring us together.
|
