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Choose a Certified Care Center

Akron Children's Hospital

One Perkins Square
Akron, Ohio 44308

https://www.akronchildrens.org

To schedule an appointment

Noelle Buso, LISW-S
Social Work Coordinator
330-543-6014

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Ann and Robert H. Lurie Children's Hospital of Chicago

225 E. Chicago Avenue
Mailbox #51
Chicago, IL 60611
luriechildrens.org

To schedule an appointment

Name: Meylin Rodriguez and Brian Reynoso

Title: Administrative Assistant Sr - Clinical and Academic

Phone number: 312-227-3550

Name: Molly Gallivan

Title: Clinical Research Coordinator III

Phone number: 312-227-3813

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Arkansas Children's Hospital

1 Children's Way, Little Rock, Arkansas, 72202

https://www.archildrens.org/

To schedule an appointment

Name: Tiffany Boyd RN

Title: Neuromuscular Clinic Coordinator

Phone number: 501-364-1850

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Billings Clinic

2800 10th Avenue N
Billings, MT 59107

To schedule an appointment

Name: Lindsay Letendre

Title:MA

Phone number: 406-238-5770

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Boston Children's Hospital

300 Longwood Avenue
Boston, Massachusetts 02115

www.childrenshospital.org

To schedule an appointment

Contact: Anellys Preito
Phone Number: 617-355-8235

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Subspecialists available in neuromuscular clinic:

Neurology Pediatric: Partha Ghosh, MD; Basil Darras, MD; Leslie Hayes, MD; Regina Laine, NP
Cardiology Pediatric: Paul Esteso, MD, PhD
Pulmonary Pediatric: Saba Sheikh, MD; Julia Lee, MD
PM & R Pediatric: Julia Shah, MD
Orthopedics Pediatric: Susan Mahan, MD
Endocrine Pediatric: Nora Renthal, MD, PhD
Nurse Coordinator: Regina Laine, NP

Services available in neuromuscular clinic:

Genetic Counselor: Elicia Estrella
Nutrition: Liana DeLoid
PT: Amy Pasternak and Maria Pinkham
Social Work: Christine Tardiff (sometimes)

Subspecialist available same day but different location:

Neurology Pediatric: Partha Ghosh, MD; Basil Darras, MD; Leslie Hayes, MD; Regina Laine, NP
Cardiology Pediatric: Paul Esteso, MD, PhD
Pulmonary Pediatric: Saba Sheikh, MD; Julia Lee, MD
Pulmonary Adult: Khalid Ismail, MD
PM & R Pediatric: Julia Shah, MD
Orthopedics Pediatric: Susan Mahan, MD
Endocrine Pediatric: Nora Renthal, MD, PhD
Nurse Coordinator: Regina Laine, NP

Services available in neuromuscular clinic:

DME (vendor, distributor): Boston O&P
Genetic Counselor: Elicia Estrella
Nutrition: Liana DeLoid
PT: Amy Pasternak and Maria Pinkham
Social Work: Christine Tardiff (sometimes)

Subspecialists available different day by referral:

Neurology Pediatric: Partha Ghosh, MD; Basil Darras, MD; Leslie Hayes, MD; Regina Laine, NP
Cardiology Pediatric: Paul Esteso, MD, PhD
Pulmonary Pediatric: Saba Sheikh, MD; Julia Lee, MD
Pulmonary Adult: Khalid Ismail, MD
PM & R Pediatric: Julia Shah, MD
GI/GU Pediatric:
Orthopedics Pediatric: Susan Mahan, MD
Endocrine Pediatric: Nora Renthal, MD, PhD
Nurse Coordinator: Regina Laine, NP
Palliative Care Pediatric & Adult: may be available to come to clinic
Developmental Pediatrics: may be available to come to clinic
Services available different day by referral:
DME (vendor, distributor): Boston O&P
Genetic Counselor: Elicia Estrella
Nutrition: Liana DeLoid
PT: Amy Pasternak and Maria Pinkham
Psychology/neuropsychology/counseling
Social Work: Christine Tardiff (sometimes)

Care provided to Adult:

Center for Duchenne Muscular Dystrophy at UCLA

300 Medical Plaza, Suite B200
Los Angeles, CA 90095
cdmd.ucla.edu

To schedule an appointment

Name: CDMD clinic (Return patients)

Title: Front Desk

Phone number: 310-794-1195

Name: Moreno, Paola

Title: Admin Coordinator (Peds and Adult patients)

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Children's Hospital of Los Angeles

4650 Sunset Blvd #82 Los Angeles, CA 90027 (mailing address)
chla.org

To schedule an appointment

Name: Elvira Sanchez

Title: Medical Assistant/ Clinical Care Associate

Phone number: 323.361.4081.

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Children's Hospital of Philadelphia

34th St. and Civic Center Blvd
Philadelphia, Pennsylvania 19104

Children's Hospital of Philadelphia is a Certiﬁed Duchenne Care Center with Clinical Research Designation

To schedule an appointment

Robyn Ruggia/ Tiffany Fauntleroy: 215-590-4719

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Children's Hospital of The King's Daughters

850 Southampton Avenue
Third Floor
Norfolk, VA 23510
www.chkd.org

To schedule an appointment

Name: Tanicia Johnson, RN

Title: Specialty Program Coordinator

Phone number: 757-668-9729

For questions between appointments

Key center personnel

Crystal M. Proud, MD, Pediatrics (Board certified), Neurology (Board certified with special qualification in child neurology), Other, Neuromuscular Medicine, Board certified in Neuromuscular medicine; She has 10 years treating pediatric patients (0-21yo) and 10 years treating adult (>22yo) patients.

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Children's Hospital of Wisconsin

9000 W. Wisconsin Ave, Milwaukee, WI 53226

www.chw.org

To schedule an appointment

Name: Claudia Krimmer

Title: Muscular Dystrophy Clinic Patient Care Coordinator/Scheduler

Phone number: (414) 607-5280 or (877) 607-5280.

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Children’s Hospital Colorado

13123 East 16th Ave
Aurora, CO 80045
childrenscolorado.org

To schedule an appointment

Name: Maria Martinez

Title: Administrative Service Coordinator

Phone number: 720-777-2806

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Children’s Mercy Hospital

2401 Gillham Rd
Kansas City, MO 64108
www.childrensmercy.org

To schedule an appointment

Heidi Lockridge 816-302-3387

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Children’s National Health System

111 Michigan Avenue NW, Washington, DC 20010

To schedule an appointment

Name: Physical Medicine and Rehabilitation (PMR) Scheduling Line

Phone number: 202-476-3094

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Cincinnati Children's Hospital Medical Center

3333 Burnet Ave
Cincinnati, OH 45229
http://www.cincinnatichildrens.org/service/c/neuromuscular/default/

To schedule an appointment

Name: Clinical Concierge

Phone number: 513-803-3000 option 1

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Subspecialists available in Neuromuscular Center:

Pediatric Neurology - Cuixia Tian, MD, Irina Rybalsky, MD, Alex Zygmunt, MD, Eileen Broomall MD, Lisa Reebals, APRN
Adult Neurology - Cuixia Tian, MD, Hani Kushlaf, MD (on Thursdays), Irina Rybalsky, MD, Alex Zygmunt, MD, Lisa Reebals, APRN
Pediatric Cardiology - Thomas Ryan, MD, Chet Villa, MD, Ben Mantell, MD, Clifford Chin, MD
Adult Cardiology - Thomas Ryan, MD, Chet Villa, MD, Ben Mantell, MD, Clifford Chin, MD
Pediatric Pulmonary - Hemant Sawnani, MD, Neepa Gurbani, MD, John Pascoe, MD, Daniel Ignatiuk, MD, Carolyn Grad, APRN
Adult Pulmonary - Hemant Sawnani, MD, Neepa Gurbani, MD, John Pascoe, MD, Daniel Ignatiuk, MD
Pediatric PM&R - Mary McMahon, MD, Ashlee Bolger, MD
Adult PM&R - Mary McMahon, MD, Ashlee Bolger, MD
Pediatric Endocrinology - Meilan Rutter, MD, Nat Nasomyont, MD, Hailey Wasserman, MD
Adult Endocrinology - Meilan Rutter, MD, Nat Nasomyont, MD
Palliative Care Pediatric - Mark Meyer, MD, Krista Nee, MD, Rachel Theinprayoon, MD, Hilary Flint, MD, Brittany Whitford, MD, Luke Mosley, MD
Palliative Care Adult - Mark Meyer, MD, Krista Nee, MD, Rachel Theinprayoon, MD, Hilary Flint, MD, Brittany Whitford, MD, Luke Mosley, MD
Nurse/Clinic Coordinator - Elizabeth Dupont Program Manager, RN, Kristan Koo Clinical Coordinator, Jaclyn Stephens, Katherine Patsture, Olivia Rolsen Pulm RN

Services available in Center:

Genetic Counselor - Chinmayee Bhimarao, Elizabeth Ulm
Nutrition - Rose Jenkins, RD, Sarah Munroe, RD
Physical Therapy - Michelle McGuire, PT, Ann McCormick, PT, Kelly Bonarrigo, PT, and Courtney Goldsbury, PT
Social Work – Christina Stewart LS
Psychology – Danielle Simmons, PhD, Kristina Decker, PhD
Research Coordinators - Angela Edmondson, Jessica Getz, Tori Hinton

Available same day but different location:

Nurse /Clinic Coordinator - Kristen Koo
Exon Skipping Therapy/Infusion Center

Available different day by referral:

GI/GU Pediatric & Adult - Ajay Kaul MD, Sherief Mansi, MD, Khalil El-Chammas, MD
Orthopedics Pediatric & Adult - Peter Sturm MD, Viral Jain MD, James McCarthy MG
Developmental Pediatrics
Surgery Pediatric & Adult - Rebecca Brown, MD
Opthalmalology - Eniolami Dosunmu, MD, William Motley, MD
Orthotics
OT
Psychology/neuropsychology/counseling - Anne Bradley, PhD
Speech Therapist
Wheelchair Specialist

Duchenne Muscular Dystrophy Clinic at Monroe Carell Jr. Children's Hospital at Vanderbilt

2200 Children's Way
Suite 5230 DOT
Nashville, TN 37232

615-875-8500

https://www.childrenshospitalvanderbilt.org/clinic/duchenne-muscular-dystrophy-dmd

To schedule an appointment

Name: Kali Barbalena
Title: Program Coordinator
Phone number: 615-875-8500

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Duke Children’s Hospital

3000 Erwin Road
Durham, NC 27710
www.dukemedicine.org

To schedule an appointment

Name: Patricia Sexton

Title: RN

Phone number: 919-613-6832

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Health Children's Hospital of Richmond VCU

1000 East Broad Street Richmond, VA 23298

https://www.vcuhealth.org/

To schedule an appointment

Name	Audrey Spradling, RN
Title	Neuromuscular Nurse Clinic/Coordinator
Phone number	804-828-2467

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Helen DeVos Pediatric Neurology Neuromuscular Clinic

35 Michigan NE, Ste 3003 Grand Rapids, MI 49503

www.helendevoschildrens.org/

To schedule an appointment

Name: Natalie Rogers

Title: Nurse Coordinator

Phone number: 616-267-2500; fax referral to 616-267-2501

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Kennedy Krieger Institute

707 N. Broadway
Baltimore, MD 21205

To schedule an appointment

Name: Angie Lasseth

Title: Clinic coordinator

Phone number: 443-923-9525

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Lucile Packard Children’s Hospital at Stanford

730 Welch Road, Palo Alto, CA 94304

To schedule an appointment

Name: LPCH Scheduling department

Phone number: 650-723-0993

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Nationwide Children’s Hospital

700 Children's Dr
Columbus, OH 43205
nationwidechildrens.org

To schedule an appointment

Name: Neuromuscular Admin Team

Phone number: 614-722-2203 option 3

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Subspecialists available in neuromuscular clinic:

Neurology Pediatric – Kevin Flanigan, MD; Chang-Yong Tsao, MD; Megan Waldrop,MD; Anne Connolly, MD; Stefan Nicolau, MD
Nurse/Clinic Coordinator - Brittany Durr, MHA, BSN, RN and Aubrey Hamilton
Cardiology Pediatric & Adult - Linda Cripe, MD; Deipanjan Nandi, MD; Emily Hayes, MD
Pulmonary Pediatric & Adult – Richard Shell, MD; Kavitha Kotha,MD; Grace Paul, MD; Courtney Gushue, MD

Services available in neuromuscular clinic:

DME (vendor, distributor) - NuMotion and National Seating and Mobility
Genetic Counselor – Alayne Meyer, MD
Nutrition – Jessica Nieves, MS, RD, LD; Olivia Clevenger, RD, LD, CLC
OT – Karen Adams
PT – Linda Lowes, Natalie Reash, Megan Iammarino, Lindsay Alfano, Melissa Smith, Christopher Steiner
Psychology/neuropsychology/counseling - Natalie Truba
Social Work – Megan Huffman
Research Coordinators - covered by multiple people

Available by referral:

Cardiology Pediatric & Adult - Linda Cripe, MD; Deipanjan Nandi, MD; Emily Hayes, MD
Pulmonary Pediatric & Adult - Richard Shell, MD; Kavitha Kotha,MD; Grace Paul, MD; Courtney Gushue, MD
Endocrine Pediatric & Adult - Sasigarn Bowden, MD
DME (vendor, distributor) - NuMotion and National Seating and Mobility
Genetic Counselor - Alayne Meyer, MS, CGC
Nutrition - Jessica Nieves, Olivia Clevenger
OT - Karen Adams
PT- covered by mulitple people
Psychology/neuropsychology/counseling - Natalie Truba, PhD
Wheelchair specialist - NCH Seating Clinic (may also refer to OSU Seating Clinic)
Exon Skipping Therapy/Infusion Clinc - NCH Infusion Clinic (most patients receive exon skipping through home infusion services as determined by insurance company)

Refer to outside center:

GI/GU Pediatric & Adult - Kent Williams, MD
Orthopedics Pediatric & Adult - Allan Beebe, MD; Allen Kadado, MD
Endocrine Pediatric & Adult - Sasigarn Bowden, MD
Develpmental Pediatrics - Garey Noritz, MD
Orthotics - script sent to local DME company

Nemours Children's Hospital, Delaware

1600 Rockland Road, Wilmington, DE 19803

To schedule an appointment

Name: Willis Brown / Amanda Hopkins

Title: Coordinators

Phone number: 302-651-5930

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Penn State Health Children's Hospital

500 University Drive
Hershey, PA 17033

To schedule an appointment

Name: Olivia Wanner

Title: Scheduling Coordinator

Phone number:717-531-0003 ext 282193

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Subspecialsts available in Neuromuscular clinic:

Neurology Pediatric - Ashutosh Kumar MD
Neurology Adult - Dustin Paul, DO
Nurse/Clinic Coordinator - Paula Cameron BSN RN
Cardiology Pediatric - Marie Shaner PA
Pulmonary Pediatric - Binu-John Sankoorikal MD
PM&R Pediatric - ShaEssa Wright DO
Orthopedics Pediatric - Joseph Petfield MD

Services available in neuromuscular clinic:

DME (vendor, distributor) - Trevor Burns, as needed
Genetic Counselor - Melissa Yelton
Nutrition - Ellen Stoute
PT - Victoria Kern
Psychology/neuropsychology/counseling - Claire Flaherty-Craig, MD
Social Work - Kayla Teeples, MSW
Research Coordinator - Ellen Stoute

Subspecialists available same day but different location:

Cardiology Adult - Eric Popjes, MD
Pulmonary Adult - Janette Foster MD
PM&R Adult - Natasha Romanoski MD
GI/GU Pediatric - Punit Jhareri, MD
Endocrine Pediatric - Daniel Hale, MD
Palliative Care Pediatric - Michelle Freeman MD
Developmental Pediatrics - Jeanette Ramer MD
Surgery Pediatric/Adult - Mary Santos MD

Services available same day but different location:

DME (vendor, distributor) - Trevor Burns
Orthotics - Lawall Orthotics
OT - Amanda Rudy
Psychology/neuropsychology/counseling - Claire Flaherty-Craig, MD
Wheelchair Specialist - Emily Hoffman
Exon Skipping Therapy/Infusion Center - Jamie Boyer BSN RN

Available different day by referral:

Neurology Pediatric - Ashutosh Kumar MD
Nurse Clinic Coordinator(s) - Paula Cameron BSN, RN
Neurology Adult - Dustin Paul, DO
Cardiology Pediatric - Marie Shaner PA
Cardiology Adult - Eric Popjes, MD
Pulmonary Pediatric - Binu-John Sankoorikal MD
Pulmonary Adult - Janette Foster MD
PM&R Pediatric - ShaEssa Wright DO
PM&R Adult - Natasha Romanoski MD
GI/GU Pediatric - Punit Jhareri, MD
Orthopedics Pediatric - Joseph Petfield MD
Endocrine Pediatric - Daniel Hale, MD
Palliative Care Pediatric - Michelle Freeman MD
Devlopmental Pediatrics - Jeanette Ramer MD
Surgery Pediatric/Adult - Mary Santos MD
DME (vendor, distributor) - Trevor Burns
Genetic Counselor - Melissa Yelton
Nutrition - Ellen Stoute
Orthotics - Lawall Orthotics
OT - Amanda Rudy
Psychology/neuropsychology/counseling - Claire Flaherty-Craig, MD
Social Work - Kayla Teeples, MSW
Wheelchair Specialist - Emily Hoffman
Research Coordinator - Ellen Stoute

Phoenix Children's

1919 E Thomas Road
Phoenix, Arizona 85016

www.phoenixchildrens.org

To schedule an appointment

Name: Kelly Lucyk, RN

Title: Nurse Specialty Care Coordinator, Neuromuscular Program

Phone number: 602-933-0970

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Riley Hospital for Children MDA/Neuromuscular Care Center

575 Riley Hospital Drive
MSA 1
Indianapolis, IN 46202D

https://www.rileychildrens.org/

To schedule an appointment

Name: Debbie Lemay RN
Title: Clinical Nurse Coordinator-Navigator
Phone number: 317 948-1313

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Seattle Children's Hospital

4800 Sand Point Way NE
Seattle, WA 98105
seattlechildrens.org

To schedule an appointment

Title: neuromuscular schedulers

Phone number: 206 987 6678

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Stony Brook

100 Nicolls Road
Stony Brook, NY 11794
www.stonybrook.edu

To schedule an appointment

Name: Kayla Vander Schuyt

Title: RN Coordinator

Phone number: 631-216-1985

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

The University of Rochester Medical Center

601 Elmwood Ave, Box 673, Rochester, NY 14642
https://www.urmc.rochester.edu/neurology/clinical-services/neuromuscular/clinics/duchenne-muscular-dystrophy-clinic.aspx

To schedule an appointment

Scheduling staff 585-275-2559

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

UC Davis Department of Physical Medicine and Rehabilitation Neuromuscular Disease Clinic

UC Davis Medical Center Department of Physical Med & Rehab
4860 Y Street, Suite 1700
Sacramento, CA 95817

916-734-7041

To schedule an appointment

UC Davis Physical Medicine and Rehabilitation
916-734-7041

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

UCSF Benioff Children's Hospital Neuromuscular Clinic

1825 4th Street, 6A

San Francisco, CA 94158

To schedule an appointment

Name: Marcie Cordova Name: Raquel Guillen

Title: practice coordinator Title: new patient coordinator

Phone number: 415-514-2133 Phone Number: 855-722-8273

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

University of Iowa Hospitals and Clinics

200 Hawkins Dr.
Iowa City, IA 52242

To schedule an appointment

General scheduling center PH: 319-356-2229

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Subspecialists available in neuromuscular clinic:

    Neurologist Pediatric & Adult - Katherine Mathews, MD; Dimah Saade, MD, Katie Lutz, MD
  Cardiology Pediatric - Gary Beasley, MD; Michelle Staron-Ehlinger, PA-C, Ian Law, MD
  Pulmonary Pediatric - Daniel Hinds, MD
  Endocrine Pediatric - Vanessa Curtis, MD
Endocrine Adult - Amal Rahhal, MD
Palliative Care Pediatric - Rebecca Benson, MD, PhD
Clinical Pharmacist - Rachel Kinn, PharmD, BCPPS
Nurse/Clinic Coordinators - Christina Trout and Linda Boehmer


Services available in neuromuscular clinic:

Nutrition - Nichole Harklau, RDN, LD
    PT - Shelley Mockler, DPT, katie Laubscher, DPT
OT - Carson Lauf, MS, OTR/L, Tiffany Reaves , MA, OTR/L
    Genetic Counselor - Kayla Blankenship, MS, CGC (requires advance scheduling)
Social Work - Marcia Gilbert, LISW
Research Coordinator - Carrie Stephen, BSN, RN
Exon Skipping Therapy/Infusion Center - Infusion center on site

Specialists available same day but different location:

Cardiology Adult - Katie Halbmeier, DNP, ARNP, FNP-BC, Ferhaan Amad, MD, PhD
  Pulmonary Adult - Herb Berger, MD (same building)
  PM & R Pediatric - Kathleen Vonderhaar, MD
PM & R Adult - Philip Chen, MD
GI/GU Pediatric - Gina Lockwood, MD, MS
GI/GU Adult - Brad Erickson, MD
Orthopedics Pediatric - Joshua Holt, MD
Developmental Pediatrics - Deborah Lin-Dyken, MD
Surgery Pediatric & Adult - Team available as needed

Subspecialist available different day by referral:

Orthopedics Pediatric - Stuart Weinstein, Jose Morcuende, MD, PhD

Services available different day by referral:

DME (vendor, distributor) - available only by referral
Wheelchair Specialist - Shelley Mockler, PT. DSc - available only by referral
Psychology/neuropsychology/counseling - Patricia Espe-Pfeifer, MD - available only by referral
Speech - available only by referral

University of Louisville/Norton Children's Hospital

231 E Chestnut Street
Louisville, Kentucky 40202

www.nortonchildrens.com

To schedule an appointment

Name: Jackie Boyd

Title: Neuromuscular Nurse Navigator

Phone number: 502-494-9137

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

University of Utah Muscular Dystrophy Clinic, Primary Children’s Hospital Neuromuscular Clinic

175 N Medical Dr, Salt Lake City, UT 84132

https://healthcare.utah.edu/neurosciences/neurology/muscular-dystrophy-clinic/

To schedule an appointment

Coordinated Scheduling

Phone number: 801.587.0462

For questions between appointments

Key center personnel

Russell Butterfield, MD, Pediatric Neurology

Specialty/board certification: Pediatric neurology, Neuromuscular

Number of years treating patients with dystrophinopathy: 15

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

University of Virginia Children's Hospital

Battle Building, 1204 W. Main St., Charlottesville, VA 22908

https://childrens.uvahealth.com/services/developmental-disabilities-and-delays

To schedule an appointment

Patient and Family Centered Scheduling, 434-924-0123

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

UPMC Children's Hospital of Pittsburgh

4401 Penn Avenue
Pittsburgh, PA 15224

www.chp.edu

To schedule an appointment

Name: Josh Hamm

Title: RN

Phone number: 412-692-8259

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

UT Southwestern Medical Center and Children's Health

2350 Stemmons Frwy, Ste 5074
Dallas, Texas 75207

www.childrens.com

To schedule an appointment

Name: Sandra Turner

Title: Scheduler

Phone number: 214-456-2768

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

UW Health- American Family Children’s Hospital

1675 Highland Ave

Madison, WI 53792

uwhealthkids.org

To schedule an appointment

Name: Hayley Lindsey, RN

Title: Clinical RN Navigator

Phone number: 608-890-6500

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Washington University at St. Louis Children's Hospital

One Children's Way
St. Louis, Missouri 63110

www.stlouischildrens.org

To schedule an appointment

Name: Neuromuscular Office

Phone number:314-362-6981

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at
the Duchenne Care Center

Yale Pediatric Neuromuscular Program

1 Long Wharf Drive
2nd Floor, Pediatric Specialty Clinic
New Haven, CT 06510
https://www.ynhh.org/childrens-hospital/find-a-location.aspx

To schedule an appointment

Name: Louise Lanouette

Title: RN

Phone number: 203-688-4221

Choose a Certified Care Center

Akron Children's Hospital

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Ann and Robert H. Lurie Children's Hospital of Chicago

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Arkansas Children's Hospital

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Billings Clinic

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Boston Children's Hospital

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Center for Duchenne Muscular Dystrophy at UCLA

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Children's Hospital of Los Angeles

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Children's Hospital of Philadelphia

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Children's Hospital of The King's Daughters

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Children's Hospital of Wisconsin

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Children’s Hospital Colorado

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Children’s Mercy Hospital

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Children’s National Health System

To schedule an appointment

For questions between appointments

Key center personnel

Number of patients with Duchenne

Neuromuscular services provided at the Duchenne Care Center

Cincinnati Children's Hospital Medical Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center

Neuromuscular services provided at
the Duchenne Care Center