April 19, 2023 / Care,Clinical Trials

PPMD’s Certified Duchenne Care Center Program – 2022 Impact & Progress

Every single person living with Duchenne deserves the best care possible. It is important that families know who is in charge of delivering the care they need and understand what centers are providing optimal, standardized care and services in agreement with the Duchenne Care Guidelines.

PPMD’s Certified Duchenne Care Center (CDCC) Program helps to ensure that centers comply with the standards of care and services that have been established in the Duchenne Care Guidelines. All CDCCs have met the requirements for, and agree to provide, optimal standardized care and services.

2022 Program Highlights

2022 was a busy year for the Certified Duchenne Care Center program and PPMD’s Care Team. With the return of safe travel, PPMD’s Rachel Schrader, VP of Clinical Care and Education, and Dr. Mena Scavina, CDCC Program Advisor, hit the road and completed countless long-awaited site visits for hopeful CDCC clinics across the country. As a result, the CDCC program grew in 2022 to include the addition of eight new clinics, including:

  • Monroe Carrell Jr. Children’s Hospital at Vanderbilt University Medical Center (Nashville, Tennessee)
  • Helen DeVos Children’s Hospital at Spectrum Health (Grand Rapids, Michigan)
  • Pittsburgh Children’s Hospital at University of Pittsburgh Medical Center (Pittsburgh, Pennsylvania)
  • Billings Clinic (Billings, Montana)
  • St. Louis Children’s Hospital at Washington University (St. Louis, Missouri)
  • Stony Brook Children’s Hospital at Stony Brook Medical Center (Stony Brook, New York)
  • Riley Children’s Health (Indianapolis, Indiana)
  • Phoenix Children’s Hospital (Phoenix, Arizona)

Find a Certified Duchenne Care Center >

The additions to the CDCC program include coverage of an additional 900 people living with Duchenne and Becker and represents six new states now included in the network of clinics, expanding the reach of comprehensive, coordinated care for people living with dystrophinopathy.

In total, PPMD’s CDCC Program is thrilled to serve more than 4,600 people living with Duchenne and Becker at 36 Certified Duchenne Care Centers in 22 states and the District of Columbia.

While the CDCC program has grown exponentially in 2022, many clinics are currently awaiting site visits or are currently in the certification pipeline. PPMD is excited to continue to grow and enhance the program in 2023 to expand our reach even further, with the ultimate goal of bringing comprehensive, coordinated care to every single person living with Duchenne or Becker, regardless of where they live.

The Community Voice is Critical

Your voice is a critical component to the continued excellence of care provided at centers within the CDCC network. One way to get involved is the annual completion of the Clinical Experiences Survey.

This survey lets the CDCC Certification Committee know what elements of care and services you receive, what is going well, and where PPMD can help advocate for improvement in the delivery of care and services at your center. Responses are collated per center, and at the end of the year, each center receives an anonymized report of their own center, as well as one representative of the network as a whole. This supports centers in the process of continuous improvement to ensure you receive the best care possible.

Your voice is an integral part of this process! Complete the survey here.

Leveraging Our Network, Advancing Duchenne Care

PPMD was thrilled to convene the 2022 Cardiac Care Meeting in Charleston, South Carolina in March. Over 80 cardiologists, researchers, industry leaders, and federal employees came together to dive into the current state of cardiac care in Duchenne and explore how we can advance cardiac care through collaboration and partnership. An accompanying first-ever Cardiac Town Hall at the 2022 PPMD Annual Conference brought themes from this revolutionary meeting directly to the community, ensuring that learnings and future aims identified from the meeting were broadly disseminated to the Duchenne community.

This meeting led to a $2 million award to ACTION with the goal of advancing cardiac care for all people living with dystrophinopathy, including Duchenne, Becker, and women carriers.

Complementary to PPMD’s Cardiac and Carrier Initiatives, we were also excited to launch a brand new pilot carrier clinic for women carriers of Duchenne at University of Pennsylvania. Under the guidance of PPMD’s Dr. Mena Scavina and UPenn leadership of Dr. Teresa Wang, PPMD is excited to invest in the continued development of carrier care and learnings from the UPenn pilot, with the ultimate goal of driving forward carrier care to someday include carrier standards of care.

The team was also thrilled to gather alongside community members at the 2022 Annual Conference in person for the first time since 2019! The team brought topics to the community for discussion and learnings including the first ever Becker track, emergency care, caring for the caregiver, cardiac care, facilitating independence and more. Registration for PPMD’s 2023 Annual Conference in Dallas, Texas is now open.

The team was also delighted to use the annual conference to launch the new THINK campaign, which through a host of new tools, ready-to-order resources, and web-based information empowers families to approach emergency situations with easy-to-follow resources. As always, materials are available to order free of charge here.

Looking Ahead to 2023

It’s full steam ahead for the CDCC Program and affiliated initiatives, projects, and programs at PPMD. We were pleased to host the 2023 Duchenne Healthcare Professionals Summit, a Duchenne-specific, professionals-only meeting this past January which brought forth collaboration and communication amongst Duchenne professionals across the country. We were also excited to hold a follow-up  Cardiac Care Workshop in Spring 2023 with a goal of driving forward cardiac care and establishing updated cardiac care guidelines for people living with Duchenne and Becker. And of course, we will continue to grow the CDCC Program with new site visits and certifications.

PPMD is Here For You!

Do you have a question, or want to see us dig into a specific topic deeper, whether by blog, webinar, or in-person meeting? We want to hear from you! Send us an email at CareTeam@parentprojectmd.org and share with us how we can better serve you.

Interested in scheduling time with one of PPMD’s Care Team members to talk through your questions about new diagnosis, care, education, transition, and more? Schedule time on our calendar here or send us an email.


The table below describes the 2022 annual report for each center.

CenterDate of CertificationCertification TypeDirector(s)Coordinator# Duchenne/ Becker patientsIn Good StandingNotes
Akron Children's Hospital2020-06-16PediatricKathryn Mosher (PM&R)Noelle Buso, MSW50yes
American Family Children's Hospital2018-09-01PediatricJennifer Kwon (Neurology)Cory Sieburg APNP31yes
Ann and Robert H. Lurie Children's Hospital2016-12-01 PediatricNancy Kuntz (Neurology)Kristen Alianello170Yes
Arkansas Children's Hospital2019-10-01PediatricAravindhan Veerapandiyan (Neurology)Tiffany Boyd RN100yes
Billings Clinic2022-06-01 PediatricElizabeth "Lynn" Wood (Neurology)Shelly Eagen NP15yesNew certification for 2022
Children's Hospital Colorado2014-06 (2019-06)PediatricSue Apkon (PM&R)Alison Ballard CPNP Hattie Foster RN180yesDeparture of Julie Parsons, addition of Michele Yang to weekly neuromuscular clinic
Children's Hospital of the King's Daughters2019-01-29PediatricCrystal Proud (Neurology)Erika Paradiso RN and Tanicia Johnson RN73yes
Children's Hospital Los Angeles2016-03-01 (2021-90/24)PediatricLeigh Ramos-Platt (Neurology)Arlene Deseo RN200yes
Children's Hospital of Richmond VCU2019-08-01PediatricAmy Harper (Neurology)Suzanne Spivey 70yes
Children's Hospital Wisconsin2018-11-06 PediatricMatthew Harmelink (Neurology)Clare Aoys48yesAddition of Dr. Nancy Bass to clinic
Children's Medical Center Dallas/UTSW2020-04-29PediatricSusan Iannaccone (Neurology) and Kaitlin Batley (Neurology)Connie Choudhury RN183yesDeparture of Dr. Diana Castro; addition of Dr. Kaitlin Batley as co-director
Children's Mercy Hospital2016-03-01 PediatricBrian Birnbaum (Cardiology) and Mark Fisher (PM&R)Baleigh Haag RN85yesNew clinic coordinator, Baleigh Haag
Children's National Hospital2014-11-01PediatricDiana Bharucha Goebel (Neurology)Kathleen Smart52yes
Cincinnati Children's Hospital Medical Center2014-06 (2019-06)PediatricCuixia Tian (Neurology), Mary McMahon (PM&R)Beth Dupont RN, Lisa Reebals CNP418yesNew clinic coordinator, Beth Dupont
Duke Children's Neuromuscular Center2015-06-01 PediatricEdward Smith (Neurology)Tricia Sexton RN188yes
Helen DeVos Children's Hospital2022-04-01PediatricJena Krueger (Neurology)Lauren Frans RN and Amy Tolliver NP60yesNew certification for 2022
Kennedy Krieger Institute2014-11 (2019-11)/ 2020-04-01 (Adult)DualJessica Nance (Neurology) and Doris Leung (Neurology)Angie Lasseth, Michael Munchel250yes
Lucile Packard Children's Hospital Stanford2015-03-01PediatricJohn Day (Neurology)Jessica Guzman RN140yes
Monroe Carrell Jr. Children's Hospital, Vanderbilt University Medical Center2022-02-16PediatricW. Bryan Burnette (Neurology), Jonathan Soslow (Cardiology), Andrew Sokolow (Pulmonology)Haleigh Oden Southern RN, Kali Barbalena200yesNew certification for 2022
Nationwide Children's Hospital2014-04 (2019-04)PediatricKevin Flanigan (Neurology) and Megan Waldrop (Neurology)Shannon Chagat NP515yes
Nemours Children's Health2017-08-01 (2022-09-06)PediatricMena Scavina (Neurology)Jennifer Hultberg79yesRecertified in 2022
Phoenix Children's Hospital2022-11-01PediatricSaunder Bernes (Neurology)Lauren Kane RN126yesNew certification for 2022
Pittsburgh Children's Hospital2022-07-16PediatricHoda Abdel-Hamid (Neurology), Jane Taylor (Pulmonology)120yesNew certification for 2022
Riley Children's Health2022-09-06PediatricMarcia Felker (Neurology)Debbie LeMay RN135yesNew certification for 2022
Seattle Children's2014-09 (2019-09)PediatricSeth Perlman (Neurology) and Jaclyn Omura (PM&R)Siserra Taylor130yes
St. Louis Children's Hospital at Washington University2022-07-01PediatricCraig Zaidman (Neurology)Leslie Rodick RN, Natalie Goedeker NP225yesNew certification for 2022
Stony Brook Children's Hospital2022-07-27PediatricPeter Morelli (Cardiology)Dawn Dawson NP25yesNew certification for 2022
UC Davis2017-01-01PediatricCraig McDonald (PM&R), Nanette Joyce (PM&R)Erica Goude, Tanya Escay RN327yes
UCLA2016-03-01 PediatricStan Nelson (Genetics), Perry Sheih (Neurology), Nancy Halnon (Cardiology)Jennifer Koo RN130yes
UCSF Benioff Children's Hospital 2017-11-01PediatricJonathan Strober (Neurology)Audrey Glancy RN44yes
University of Iowa2015-02-01 PediatricKatherine Mathews (Neurology)Christina Trout RN, MSN120yes
University of Missouri2019-09-01 AdultVovanti Jones (PM&R)Amanda Hueffmeier, Natalie Taylor22yes
University of Rochester2019-02-11 PediatricEmma Ciafaloni (Neurology)Deb Guntrum FNP, Erin Collins120yes
University of Utah/Primary Children's Hospital2019-04-26 PediatricRussell Butterfield (Neurology)105yes
University of Virginia Children's Hospital2018-11-28 PediatricRebecca Scharf (Neurodevelopmental Pediatrics and Neurology)Lorie Nouwairi RN, Chelsea Masterson55yes
Yale New Haven Children's Hospital2016-12-01 (2022-02/10)PediatricCristian Ionita (Neurology)Louise Lanouette42yesRecertified in 2022

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