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Wednesday, July 22
 

6:00pm EDT

Welcome Address
Opening Welcome Address for PPMD's 2020 Virtual Annual Conference.
Speakers
avatar for Pat Furlong (PPMD)

Pat Furlong (PPMD)

Founding President & CEO, Parent Project Muscular Dystrophy

Wednesday July 22, 2020 6:00pm - 6:20pm EDT
Live Stream
  General Session

6:20pm EDT

COVID-19 and Re-Entry: Where Are We Now?
As the country begins the slow process of reopening after quarantine, we discuss what life may look like for Duchenne families in a post-quarantine world and look ahead to steps we can take now as we face the possible combination of both flu and COVID-19 this fall.

Panelists:
  • Clinician Perspective: Jeffery Auletta, MD, Nationwide Children's Hospital
  • Clinician Perspective: Oren Kupfer, MD, Children's Hospital Colorado
  • Parent Perspective: Joanna Johnson, parent
  • Industry Perspective:  Joanne M. Donovan, M.D., Ph.D., Catabasis® Pharmaceuticals, Inc.
Moderators
avatar for Pat Furlong (PPMD)

Pat Furlong (PPMD)

Founding President & CEO, Parent Project Muscular Dystrophy
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Speakers
avatar for Jeffery Auletta, MD (Nationwide Children's Hospital)
avatar for Oren Kupfer, MD (Children's Hospital Colorado)
avatar for Joanna Johnson, parent

Joanna Johnson, parent

Board Member, Parent Project Muscular Dystrophy
avatar for Joanne M Donovan, MD PhD (Catabasis)

Joanne M Donovan, MD PhD (Catabasis)

Chief Medical Officer, Catabasis

Wednesday July 22, 2020 6:20pm - 6:50pm EDT
Live Stream
  General Session

6:50pm EDT

Break
Wednesday July 22, 2020 6:50pm - 6:55pm EDT
Live Stream
  Break

6:55pm EDT

PPMD Pop Quiz #1
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Wednesday July 22, 2020 6:55pm - 7:00pm EDT
Live Stream
  Pop Quiz

7:00pm EDT

In the Pipeline: Reducing Inflammation
Inflammation in Duchenne results from a lack of dystrophin and, to date, steroids are the only approved therapy that address this facet of disease. This panel will discuss steroids, potential therapies aimed at reducing inflammation, and potential therapies that may work in combination with steroids.

Panelists:
  • ReveraGen BioPharma (Eric Hoffman, PhD, VP Research)
  • Catabasis Pharmaceuticals (Joanne M Donovan, MD PhD, Chief Medical Officer)
  • PTC Therapeutics (Brian E. Pfister, PhD, MBA, Executive Director, US Medical Head - Neurology)
  • Antisense Therapeutics (Gil Price, MD, Chief Medical Officer)

Followed by Q & A

VIEW OUR ON-DEMAND LIBRARY
Visit the On-Demand Library to watch pre-recorded videos relevant to this session before heading into Conference:
Please submit questions ahead of our live panel discussions to comments@parentprojectmd.org.
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Eric Hoffman, PhD (ReveraGen BioPharma)
avatar for Joanne M Donovan, MD PhD (Catabasis)

Joanne M Donovan, MD PhD (Catabasis)

Chief Medical Officer, Catabasis
PT

PTC Therapeutics

PTC Therapeutics
avatar for Gil Price, MD (Antisense Therapeutics)

Gil Price, MD (Antisense Therapeutics)

Chief Medical Officer, Antisense Therapeutics

Wednesday July 22, 2020 7:00pm - 7:50pm EDT
Live Stream
  General Session, In the Pipeline

7:50pm EDT

End of Day & Special Guest Performance by Cooper Jones
As we say goodnight, we have a special performance by Cooper Jones from Redondo Beach, California. Cooper is an 18 year old with Duchenne, who recently graduated high school and will be going to Cal State Long beach in the fall. Cooper started learning how to play the guitar and singing 2 years ago and is now starting to write his own songs. Enjoy this special performance from Cooper and we’ll see you tomorrow!
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Wednesday July 22, 2020 7:50pm - 7:55pm EDT
Live Stream
  General Session
 
Thursday, July 23
 

12:00pm EDT

Lunch & Learn: Duchenne Family Assistance Program
Little Hercules Foundation and Team Joseph formed the Duchenne Family Assistance Program (DFAP) in 2017, to provide an expanded set of resources for families in need. Little Hercules’ work includes guiding Duchenne families through the complex insurance and appeals processes of both public and private health insurers, and also includes guidance on financial resources (SSI, Medicaid waivers, etc.). Team Joseph leads the program arm that supports families directly with financial assistance and resources to purchase equipment, accessible ramps, transportation to clinic visits, vehicle modifications, and home modifications. Assistance is also available for educational opportunities, such as conferences. Join Ryan Fischer and Brian Denger from PPMD who will lead a discussion with the team from DFAP to explore how families can tap into these much needed resources.

Access this Lunch & Learn breakout session:
https://parentprojectmd-org.zoom.us/webinar/register/WN_ZQ9LFxkwTrej8axOJBa8OQ
Moderators
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy
avatar for Brian Denger (PPMD)

Brian Denger (PPMD)

Community Engagement Coordinator, Parent Project Muscular Dystrophy

Speakers
TJ
LH

Thursday July 23, 2020 12:00pm - 1:00pm EDT
Breakout Session (Zoom)
  Breakout Session, Lunch & Learn

2:00pm EDT

Lunch & Learn: Casimir DVA - How Video Assessments Are Helping the Community Understand Duchenne Progression
An educational discussion about how and why video assessments may help the Duchenne community and understand how video assessments may be more sensitive to the way patients move over a shorter amount of time than other assessments.

Access this Lunch & Learn breakout session:
https://parentprojectmd-org.zoom.us/webinar/register/WN_FbzDprG9SfS3KdTirXNtYQ
Moderators
avatar for Pat Furlong (PPMD)

Pat Furlong (PPMD)

Founding President & CEO, Parent Project Muscular Dystrophy
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Speakers
avatar for Mindy Leffler (Casimir)

Mindy Leffler (Casimir)

President, Co-Founder, Casimir
C

Casimir

Casimir
avatar for Linda Lowes, PT, PhD

Linda Lowes, PT, PhD

Principal Investigator, Center of Gene Therapy, Nationwide Children’s Hospital

Thursday July 23, 2020 2:00pm - 3:00pm EDT
Breakout Session (Zoom)
  Breakout Session, Lunch & Learn

5:55pm EDT

Welcome to Thursday
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Thursday July 23, 2020 5:55pm - 6:00pm EDT
Live Stream
  General Session

6:00pm EDT

Building Resilience: Overcoming Compassion Fatigue and Burnout
A Duchenne diagnosis affects the entire support network, including family and healthcare providers. In this session, parents and experts discuss the importance of self-care so that you can ultimately be the best care provider for your family.

Panelists:
  • Rachel Poysky, parent, PPMD's Connect South Texas Coordinator
  • Betty Vertin, parent, PPMD's Connect Nebraska Coordinator
  • Gretchen Egner, parent, PPMD's Connect Wisconsin Coordinator
  • Natalie Truba, PhD, Nationwide Children's Hospital
  • Brandon Kozar, PsyD, MBA, Nationwide Children's Hospital
  • James Poysky, PhD, parent, Katy Child Psychology Associates
Q&A & Discussion
Moderators
avatar for Kathi Kinnett, MSN, APRN (PPMD)

Kathi Kinnett, MSN, APRN (PPMD)

Advisor, Clinical Care, Parent Project Muscular Dystrophy

Speakers
avatar for Rachel Poysky, parent

Rachel Poysky, parent

South Texas Coordinator, PPMD's Connect
avatar for Betty Vertin, parent

Betty Vertin, parent

Nebraska Coordinator, PPMD's Connect
avatar for Gretchen Egner, parent

Gretchen Egner, parent

Wisconsin Coordinator, PPMD's Connect
avatar for Natalie Truba, PhD (Nationwide Children's Hospital)
avatar for Brandon Kozar, PsyD, MBA (Nationwide Children's Hospital)
avatar for James Poysky, PhD, parent (Katy Child Psychology Associates)

Thursday July 23, 2020 6:00pm - 7:00pm EDT
Live Stream
  General Session, Care Panel

7:00pm EDT

Break
Thursday July 23, 2020 7:00pm - 7:15pm EDT
Live Stream
  Break

7:15pm EDT

PPMD Pop Quiz #2
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Thursday July 23, 2020 7:15pm - 7:20pm EDT
Live Stream
  Pop Quiz

7:20pm EDT

In the Pipeline: Restoring Dystrophin
Dystrophin restoration or replacement aims to treat the underlying cause of Duchenne which is the lack of dystrophin, the protein that provides stability to the muscles. This panel will feature companies developing exon skipping and nonsense mutation read-through therapies that aim to restore dystrophin production.

Panelists:
  • PTC Therapeutics (Richard A. Able Jr., PhD, DMD Therapeutic Area Lead, Global Medical Affairs)
  • Daiichi-Sankyo (Niwata Yuichiro, M.S., R.Ph. Global Team Leader  DS 5141 Exon Skipping Program)
  • Sarepta (Olga Mitelman, MD, Head of US Medical Affairs)
  • NS Pharma (Leslie Magnus, MD, VP Medical Affairs)

Followed by Q & A

VIEW OUR ON-DEMAND LIBRARY
Visit the On-Demand Library to watch pre-recorded videos relevant to this session before heading into Conference:
Please submit questions ahead of our live panel discussions to comments@parentprojectmd.org.
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Richard A. Able Jr., PhD (PTC)

Richard A. Able Jr., PhD (PTC)

DMD Therapeutic Area Lead, Global Medical Affairs, PTC Therapeutics
avatar for Niwata Yuichiro MS, RPh (Daiichi-Sankyo)

Niwata Yuichiro MS, RPh (Daiichi-Sankyo)

Global Team Leader DS 5141 Exon Skipping Program, Daiichi-Sankyo
avatar for Olga Mitelman, MD (Sarepta)

Olga Mitelman, MD (Sarepta)

Head of US Medical Affairs, Sarepta Therapeutics
avatar for Leslie Magnus, MD (NS Pharma)

Thursday July 23, 2020 7:20pm - 8:15pm EDT
Live Stream
  General Session, In the Pipeline

8:00pm EDT

Teen & Adult Track: Virtual Zoom Social (Private Session for Teens & Adults with Duchenne 14+)
Please note, this is a private session for Teen & Adult Track attendees only. You must be a teen/adult living with Duchenne/Becker ages 14+ to participate.

Access the session:
https://parentprojectmd-org.zoom.us/meeting/register/tJAvf-GuqzMqGdInbCzK-g5wJnwwVoZVZt2a

If you have any questions or need additional information, please contact amanda@parentprojectmd.org.
Speakers
avatar for Hosted by PPMD's Adult Advisory Committee (PAAC)

Hosted by PPMD's Adult Advisory Committee (PAAC)

Parent Project Muscular Dystrophy

Thursday July 23, 2020 8:00pm - 9:00pm EDT
Social (Zoom)
  Teen & Adult Track, Teen & Adult Track Social

8:15pm EDT

End of Day
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Thursday July 23, 2020 8:15pm - 8:15pm EDT
Live Stream
  General Session
 
Friday, July 24
 

2:55pm EDT

Welcome to Friday
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Friday July 24, 2020 2:55pm - 3:00pm EDT
Live Stream
  General Session

3:00pm EDT

In the Pipeline: Downstream Targets
When there isn’t enough dystrophin in the body, the muscle is damaged and the body naturally tries to repair this damage through muscle regeneration. This continual state of muscle degeneration and regeneration produces other effects such as fibrosis, inflammation, calcium imbalance, muscle wasting, cellular energy depletion (mitochondria), and cardiac dysfunction. These are called downstream effects because they happen due to the lack of dystrophin. This panel will feature companies developing therapeutic strategies aimed at addressing downstream targets focused on mitochondria and the heart.

Panelists:
  • Astellas Pharma (Gerard Marek MD PhD, Executive Medical Director)
  • Santhera Pharmaceuticals (Kristina Nygren, MD, Chief Medical Officer)
  • Cumberland Pharmaceuticals (Larry Markham, MD)
  • Epirium Bio (Ransi Somaratne, M.D, CMO)

Followed by Q &A

VIEW OUR ON-DEMAND LIBRARY
Visit the On-Demand Library to watch pre-recorded videos relevant to this session before heading into Conference:
Please submit questions ahead of our live panel discussions to comments@parentprojectmd.org.
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Gerard J Marek, MD, PhD (Astellas Pharma)
avatar for Larry Markham, MD (Cumberland Pharmaceuticals)
avatar for Shabir Hasham, MD (Santhera)

Shabir Hasham, MD (Santhera)

Global Program Lead, Santhera Pharmaceuticals
avatar for Ransi Somaratne, MD FACC (Epirium Bio)

Friday July 24, 2020 3:00pm - 3:50pm EDT
Live Stream
  General Session, In the Pipeline

3:50pm EDT

Break
Friday July 24, 2020 3:50pm - 4:00pm EDT
Live Stream
  Break

4:00pm EDT

Duchenne Care: Endocrinology in Duchenne (Bone Health, Growth, & Puberty)
While most people with Duchenne are not usually born with endocrine (hormone) issues, steroids may change the way our body’s natural hormones are made and work. In this panel, experts will discuss bone health, growth, and puberty in Duchenne, as well as the latest care recommendations.

Panel Topics & Speakers:
  • Bone Health - Leanne Ward (University of Ottawa) & Adam Wechsler, PAAC Member
  • Height & Weight - Phil Zeitler (Colorado) and Colin Werth, PAAC Member
  • Puberty - Rob Benjamin (Duke) & Austin Leclaire, PAAC Member
Followed by Q & A
Moderators
avatar for Kathi Kinnett, MSN, APRN (PPMD)

Kathi Kinnett, MSN, APRN (PPMD)

Advisor, Clinical Care, Parent Project Muscular Dystrophy

Speakers
avatar for Leanne Ward, MD, FRCPC (University of Ottawa)
avatar for Phil Zeitler, MD (Children's Hospital Colorado)
avatar for Rob Benjamin, MD (Duke Children's Hospital)
avatar for Adam Wechsler, PAAC Member

Adam Wechsler, PAAC Member

Member, PPMD Adult Advisory Committee
avatar for Colin Werth, PAAC Member

Colin Werth, PAAC Member

Member, PPMD Adult Advisory Committee
avatar for Austin Leclaire, PAAC Member

Austin Leclaire, PAAC Member

Member, PPMD Adult Advisory Committee

Friday July 24, 2020 4:00pm - 5:00pm EDT
Live Stream
  General Session, Care Panel

5:00pm EDT

Break
Friday July 24, 2020 5:00pm - 5:20pm EDT
Live Stream
  Break

5:20pm EDT

PPMD Pop Quiz #3
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Friday July 24, 2020 5:20pm - 5:25pm EDT
Live Stream
  Pop Quiz

5:25pm EDT

Duchenne Care: Acute Pulmonary Management
Respiratory health is critically important in Duchenne. In this panel, expert pulmonologists will discuss early interventions, how to protect the lungs and maintain pulmonary function, creating a plan for potential emergencies, and what we have learned from the COVID-19 pandemic.

Panel Topics & Presenters:
  • Prevention - Richard Shell, MD (Nationwide)
  • Lessons Learned from COVID-19 - Lisa Wolfe, MD (Northwestern)
  • Emergency Care Planning - Hank Mayer, MD (CHOP)
Followed by Q &A
Moderators
avatar for Rachel Schrader, MS, APRN, CPNP-PC (PPMD)

Rachel Schrader, MS, APRN, CPNP-PC (PPMD)

Vice President, Clinical Care & Education, Parent Project Muscular Dystrophy

Speakers
avatar for Richard Shell, MD (Nationwide Children's Hospital)
avatar for Lisa Wolfe, MD (Northwestern Memorial Hospital)
avatar for Hank Mayer, MD (Children's Hospital of Philadelphia)

Hank Mayer, MD (Children's Hospital of Philadelphia)

Children's Hospital of Philadelphia

Friday July 24, 2020 5:25pm - 6:25pm EDT
Live Stream
  General Session, Care Panel

6:25pm EDT

Dinner Break
Friday July 24, 2020 6:25pm - 7:10pm EDT
Live Stream
  Break

7:10pm EDT

PPMD Pop Quiz #4
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Friday July 24, 2020 7:10pm - 7:15pm EDT
Live Stream
  Pop Quiz

7:15pm EDT

In the Pipeline: Gene Therapy
Gene therapy is a way to treat a disease by changing gene expression. That can be accomplished by correcting the mutation in the gene, providing a replacement copy of the mutated gene, introducing a surrogate (substitute) gene that produces a protein that can perform a similar role to the non-functional protein, or supplying genes that treat other symptoms of the disease. Gene therapy holds incredible promise in Duchenne and this panel will feature companies exploring various gene therapy approaches to treat Duchenne.

Gene Therapy Introduction by Tim Cripe, MD, PhD, FAAP (Nationwide Children's Hospital)

Panelists:
  • Sarepta (Louise Rodino-Klapac, PhD, Senior Vice President, Gene Therapy)
  • Pfizer (Beth Belluscio, MD-PhD, Global Clinical Lead)
  • Audentes (Fulvio Mavilio, PhD, Senior Vice President, Translational Science)
  • Solid (Joel Schneider, Ph.D., Chief Technology Officer)

Followed by discussion and Q & A

VIEW OUR ON-DEMAND LIBRARY
Visit the On-Demand Library to watch pre-recorded videos relevant to this session before heading into Conference:
Please submit questions ahead of our live panel discussions to comments@parentprojectmd.org.
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy
avatar for Tim Cripe, MD, PhD, FAAP (Nationwide Children's Hospital)

Speakers
ES
avatar for Beth Belluscio, MD, PhD (Pfizer, Inc.)
avatar for Fulvio Mavilio, PhD (Audentes)

Fulvio Mavilio, PhD (Audentes)

Senior Vice President, Translational Science, Audentes Therapeutics
avatar for Carl Morris, PhD (Solid Biosciences)

Friday July 24, 2020 7:15pm - 8:25pm EDT
Live Stream
  General Session, In the Pipeline

8:25pm EDT

PPMD Pop Quiz #5
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Friday July 24, 2020 8:25pm - 8:30pm EDT
Live Stream
  Pop Quiz

8:30pm EDT

End of Day
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Friday July 24, 2020 8:30pm - 8:30pm EDT
Live Stream
  General Session

8:30pm EDT

Teen & Adult Track: Living with Duchenne (Private Session for Teens & Adults with Duchenne/Becker 14+)
Participants are encouraged to share some of the challenges faced in everyday life, as well as life hacks that make daily activities a little bit easier. Please note, this is a private session for Teen & Adult Track attendees only, and is hosted by PPMD’s Adult Advisory Committee (PAAC). You must be a teen/adult living with Duchenne/Becker ages 14+ to participate.

Access the session:
https://parentprojectmd-org.zoom.us/meeting/register/tJIrfuuvqz8tEtO9B5b-eiVjYlmJali_GqRQ

If you have any questions or need additional information, please contact amanda@parentprojectmd.org.

Speakers
avatar for Hosted by PPMD's Adult Advisory Committee (PAAC)

Hosted by PPMD's Adult Advisory Committee (PAAC)

Parent Project Muscular Dystrophy

Friday July 24, 2020 8:30pm - 10:30pm EDT
Teen & Adult Track (Zoom)
  Teen & Adult Track, Teen & Adult Track Social

8:45pm EDT

Zoom Social Night for Moms, Dads, Grandparents & Siblings (Advance Sign Up Required)
Hang out virtually with other Duchenne families in our Friday night Zoom socials for Moms, Dads, Grandparents and Siblings! Advance sign up required.

Sign up for Zoom social night:
https://www.parentprojectmd.org/2020-ppmd-virtual-conference-hub/sign-up-for-zoom-social-night/
Speakers
avatar for Hosted by PPMD's Sibs Connect Coordinators

Friday July 24, 2020 8:45pm - 9:45pm EDT
Social (Zoom)
  Social Event
 
Saturday, July 25
 

9:00am EDT

Morning Yoga for Parents
Join us for morning yoga class, no experience necessary.
Speakers
avatar for Michelle Furlong

Saturday July 25, 2020 9:00am - 10:00am EDT
Live Stream
  General Session, Yoga

10:35am EDT

Welcome to Saturday
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Saturday July 25, 2020 10:35am - 10:40am EDT
Live Stream
  General Session

10:40am EDT

PPMD Pop Quiz #6
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Saturday July 25, 2020 10:40am - 10:45am EDT
Live Stream
  Pop Quiz

10:45am EDT

Duchenne Care: Caring for Female Carriers of Duchenne
Learning that you are a female carrier of Duchenne can be shocking, overwhelming, and confusing. In this panel, experts will discuss not only the potential physical implications of carrying the Duchenne gene, but also managing the psychological effects of this diagnosis.  

Panel Topics & Speakers:
  • Genetics - Stan Nelson, MD (UCLA)
  • Cardiology - May Ling Mah, MD (Nationwide)
  • Psychosocial Considerations - Jamie Jackson, PhD (Nationwide)
  • Neuromuscular Management - Kevin Flanigan, MD (Nationwide)
Followed by Q & A
Moderators
avatar for Pat Furlong (PPMD)

Pat Furlong (PPMD)

Founding President & CEO, Parent Project Muscular Dystrophy

Speakers
avatar for Stanley Nelson, MD (UCLA)
avatar for May Ling Mah, MD (Nationwide Children's Hospital)
avatar for Jamie Jackson, PhD (Nationwide Children's Hospital)
avatar for Kevin Flanigan, MD (Nationwide Children's Hospital)

Saturday July 25, 2020 10:45am - 12:00pm EDT
Live Stream
  General Session, Care Panel

12:00pm EDT

Lunch Break
Saturday July 25, 2020 12:00pm - 1:00pm EDT
Live Stream
  Break

1:00pm EDT

Keynote: Language Shapes our Landscape
Rachel Callander is a speaker, TEDx presenter, and the author of the internationally awarded book “Super Power Baby Project.” After losing her daughter to a rare genetic disease at 2 ½ years old, Rachel now teaches how the first words used at diagnosis critically shape how a parent perceives their future. It’s a conversation about empowerment – for parents and health professionals alike.
https://rachelcallander.com/
Speakers
avatar for Rachel Callander, Patient Experience Advocate

Saturday July 25, 2020 1:00pm - 1:55pm EDT
Live Stream
  General Session

1:00pm EDT

Teen & Adult Track: Quarterbacking Your Care (Private Session for Teens & Adults with Duchenne/Becker 14+)
As teens and young adults, you are at an age where it is important to start advocating for yourself – this includes leading the conversation with your team of doctors and clinicians. In this session, private for teens (14 years and older) and adults living with Duchenne, you will learn important tips to start quarterbacking your own care and leading an independent life.

Please note, this is a private session for Teen & Adult Track attendees only, and is hosted by PPMD’s Adult Advisory Committee (PAAC). You must be a teen/adult living with Duchenne/Becker ages 14+ to participate.

Access the session:
https://parentprojectmd-org.zoom.us/webinar/register/WN_JKXFFG0qS-mNSbTpRufqNQ

If you have any questions or need additional information, please contact amanda@parentprojectmd.org.

Moderators
avatar for Hosted by PPMD's Adult Advisory Committee (PAAC)

Hosted by PPMD's Adult Advisory Committee (PAAC)

Parent Project Muscular Dystrophy
avatar for Amanda Wilkison, RN, BSN (PPMD)

Amanda Wilkison, RN, BSN (PPMD)

Director, Clinical Care & Education, Parent Project Muscular Dystrophy
avatar for Patrick Moeschen (PPMD)

Patrick Moeschen (PPMD)

Coordinator, Adult Advocacy & Engagement, Parent Project Muscular Dystrophy

Speakers
avatar for Kent Williams, MD (Nationwide Children’s Hospital)
AB
avatar for Vovanti Jones, MD (University of Missouri)
avatar for Dan Sheehan, MD (University of Buffalo)
avatar for Andreas Barth, MD (Kennedy Krieger Institute)

Saturday July 25, 2020 1:00pm - 2:00pm EDT
Teen & Adult Track (Zoom)
  Teen & Adult Track, Teen & Adult Track Social

2:05pm EDT

PPMD Pop Quiz #7
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Saturday July 25, 2020 2:05pm - 2:10pm EDT
Live Stream
  Pop Quiz

2:10pm EDT

In the Pipeline: Combating Fibrosis and Inflammation
Like inflammation, fibrosis is a downstream effect of the lack of dystrophin and occurs as chronic inflammation that prevents muscle repair. Fibrosis is defined as the thickening and scarring of connective tissue, usually as a result of injury. This panel will discuss therapies that aim to reduce fibrosis and inflammation by decreasing the breakdown of mature muscle cells and increasing muscle strength.

Panelists:
  • FibroGen (Bassem Elmankabadi, MD, Executive Medical supervisor, Global Clinical Development Lead)
  • Italfarmaco (Paolo Bettica, MD, PhD, CMO)
  • Capricor (Linda Marban, PhD CEO)
Followed by discussion and Q &A

VIEW OUR ON-DEMAND LIBRARY
Visit the On-Demand Library to watch pre-recorded videos relevant to this session before heading into Conference:
Please submit questions ahead of our live panel discussions to comments@parentprojectmd.org.
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Speakers
avatar for Bassem Elmankabadi, MD (FibroGen)
avatar for Paolo Bettica, MD, PhD (Italfarmaco S.p.A.)
avatar for Linda Marban, PhD (Capricor Therapeutics)

Saturday July 25, 2020 2:10pm - 2:50pm EDT
Live Stream
  General Session, In the Pipeline

2:45pm EDT

Break
Saturday July 25, 2020 2:45pm - 3:00pm EDT
Live Stream
  Break

3:00pm EDT

PPMD Pop Quiz #8
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Saturday July 25, 2020 3:00pm - 3:05pm EDT
Live Stream
  Pop Quiz

3:05pm EDT

Duchenne Care: The Role of Physical Medicine & Rehabilitation (PM&R) in Neuromuscular Care
In this panel discussion, learn more about the Physical Medicine & Rehabilitation (PM&R) subspecialty, who play a critical role in maintaining optimal care in Duchenne. PM&R physicians work closely with neurologists, physical and occupational therapists, and a variety of other healthcare experts to help you or your child maintain strength, function, and range of motion.

Panelists:
  • Sue Apkon, MD, Children's Hospital Colorado
  • Julie Parsons, MD, Children's Hospital Colorado
  • Terri Carry, PT, Children's Hospital Colorado
  • Jaclyn Omura, MD, Seattle Children's Hospital
  • Seth Perlman, MD, Seattle Children's Hospital
  • Leslie Vogel, MSPT, Seattle Children's Hospital

Followed by Q & A
Moderators
avatar for Rachel Schrader, MS, APRN, CPNP-PC (PPMD)

Rachel Schrader, MS, APRN, CPNP-PC (PPMD)

Vice President, Clinical Care & Education, Parent Project Muscular Dystrophy

Speakers
avatar for Sue Apkon, MD (Children's Hospital Colorado)
avatar for Julie Parsons, MD (Children's Hospital Colorado)
avatar for Terri Carry, PT (Children's Hospital Colorado)
avatar for Jaclyn Omura, MD (Seattle Children's Hospital)
avatar for Seth Perlman, MD (Seattle Children's Hospital)
avatar for Leslie Vogel, MSPT (Seattle Children's Hospital)

Saturday July 25, 2020 3:05pm - 3:50pm EDT
Live Stream
  General Session, Care Panel

3:50pm EDT

Cannabis and Duchenne
While cannabis (marijuana) is easily accessible now in many states, there are still many unknowns about the use in children and adults with Duchenne. This presentation will help the listener understand the different types/forms of cannabis, what is known in Duchenne, and important considerations before using.
Moderators
avatar for Rachel Schrader, MS, APRN, CPNP-PC (PPMD)

Rachel Schrader, MS, APRN, CPNP-PC (PPMD)

Vice President, Clinical Care & Education, Parent Project Muscular Dystrophy

Speakers
avatar for Sue Apkon, MD (Children's Hospital Colorado)

Saturday July 25, 2020 3:50pm - 4:05pm EDT
Live Stream
  General Session, Care Panel

4:00pm EDT

Break
Saturday July 25, 2020 4:00pm - 4:15pm EDT
Live Stream
  Break

4:15pm EDT

Rescuing the Heart: Why Cardiac Intervention Is So Critical
PPMD has an ongoing commitment to cardiac care, because the heart is a muscle too. Heart issues don’t just affect some people with Duchenne; they affect ALL people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and heart failure remain the leading cause of death in Duchenne. This expert panel discusses the latest in cardiac care and will update you on research being conducted to help rescue cardiac function.

Panelists:
  • Overview of Cardiac Care - Chris Spurney, MD
  • The Importance of Collaboration: ACTION-DMD - Chet Villa, MD
  • Staying in the “Loop” with Cardiac Research - Beth McNally, MD, PhD
Followed by Q&A
Moderators
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy
avatar for Kathi Kinnett, MSN, APRN (PPMD)

Kathi Kinnett, MSN, APRN (PPMD)

Advisor, Clinical Care, Parent Project Muscular Dystrophy

Speakers
avatar for Beth McNally, MD, PhD (Northwestern)
avatar for Chet Villa, MD (Cincinnati Children's Hospital)
avatar for Chris Spurney, MD (Children's National)

Saturday July 25, 2020 4:15pm - 5:15pm EDT
Live Stream
  General Session, Care Panel

5:15pm EDT

Break
Saturday July 25, 2020 5:15pm - 5:30pm EDT
Live Stream
  Break

5:30pm EDT

PPMD Pop Quiz #9
Speakers
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Saturday July 25, 2020 5:30pm - 5:40pm EDT
Live Stream
  Pop Quiz

5:40pm EDT

Emerging Strategies in Duchenne
The PPMD team is joined by leading Duchenne researchers to discuss exciting areas of research in development that hold promise for Duchenne, such as gene editing and non-viral delivery.

Panelists:
  • Kevin Flanigan, MD, Nationwide Children's Hospital
  • Lee Sweeney, PhD, University of Florida
  • Melissa Spencer, PhD, UCLA
Moderators
avatar for Pat Furlong (PPMD)

Pat Furlong (PPMD)

Founding President & CEO, Parent Project Muscular Dystrophy
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy

Speakers
avatar for Kevin Flanigan, MD (Nationwide Children's Hospital)
avatar for Lee Sweeney, PhD (University of Florida)
avatar for Melissa Spencer, PhD (UCLA)

Saturday July 25, 2020 5:40pm - 6:30pm EDT
Live Stream
  General Session, In the Pipeline

6:35pm EDT

Closing Address: Looking Ahead to 2021
Joel Wood, founder and president of The Foundation to Eradicate Duchenne, and a lifelong friend of PPMD, helps us wrap up our Annual Conference with a look ahead at 2021.
Speakers
avatar for Joel Wood

Joel Wood

Founder and President, The Foundation to Eradicate Duchenne

Saturday July 25, 2020 6:35pm - 6:50pm EDT
Live Stream
  General Session

6:55pm EDT

End of Conference
Moderators
avatar for Ryan Fischer (PPMD)

Ryan Fischer (PPMD)

Chief Advocacy Officer, Parent Project Muscular Dystrophy
avatar for Eric Camino, PhD (PPMD)

Eric Camino, PhD (PPMD)

Vice President, Research & Clinical Innovation, Parent Project Muscular Dystrophy

Saturday July 25, 2020 6:55pm - 7:00pm EDT
Live Stream
  General Session
 
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