Founder & CEO of CureDuchenne
Receiving the diagnosis for Duchenne was the scariest time of my life and I know all about the emotions you are feeling. Equipping yourself with the knowledge you need to get the best care for your child is the best thing you can do. Connecting with other families who are going through the same thing can be incredibly helpful as well.
Once I had the confidence that I was going down the right path of care for my son, I founded the nonprofit CureDuchenne and dedicated my life to raising funds to find a cure and to helping other families navigate care and clinical trials. Consider all of us at CureDuchenne as your team that is striving to make the future better for your child.
This special section of our website was created to address the unique needs of newly diagnosed families. Learning someone you love has been diagnosed with Duchenne is an emotional experience and trying to understand all the new information can be overwhelming. However, important decisions are made soon after diagnosis. We aim to provide the information and resources necessary to help families make decisions that contribute to obtaining the best care possible from the very beginning.
CureDuchenne is a resource you can rely on. We have parents on staff who have children living with Duchenne, a team with years of experience working with families affected by Duchenne, the top medical and scientific advisors, and a vast network of families working together to support each other. Please reach out to us if you need assistance or have any questions. We can help. We want to help. It's the reason we exist.
A positive screen of Duchenne muscular dystrophy leads to a time of uncertainty that is very difficult for any family to endure. A positive newborn screen does not necessarily mean that a baby has Duchenne, but it does indicate that further testing should be performed as soon as possible. If you have received a positive newborn screen result, or initial testing shows the possibility of a Duchenne diagnosis, reaching out to your doctor to determine the best pathway to a confirmed diagnosis as soon as possible is very important. Most times, symptoms for Duchenne do not appear until a child is 3-5 years old. Knowing that Duchenne may impact your family before symptoms appear means that you can learn and prepare to best help your child.
With early diagnosis, you can begin treatment as soon as clinically appropriate that may help preserve muscle strength and slow progression of weakness and loss of function. We are very encouraged with the pace of research, clinical trials and medical advancement for Duchenne. For children identified and diagnosed today, there is reason for hope, and early diagnosis may allow earlier intervention with effective treatments. CureDuchenne is here for you. We want to help you understanding the disease, connect to our community and provide you with resources to support your pursuit of a diagnosis, appropriate care and treatment for Duchenne.
CureDuchenne 1:1 provides meetings with our scientists, physical therapists, Duchenne parents, fundraising team and family support resource coordinators.
Duchenne muscular dystrophy (DMD) is the most common form of muscular dystrophy, occurring in approximately 1:5,000 male births. It's a genetic disease caused by a mutation in the gene needed to make the protein dystrophin. Genes contain smaller sections known as introns and exons. There are several types of mutations, but deletions (72%) and duplications (7%) of one or more of the 79 exons within the DMD gene are most common among people diagnosed with Duchenne muscular dystrophy. Dystrophin is a protein that stabilizes and protects muscle during use. Without a sufficient amount of dystrophin, muscle cells throughout the entire body become damaged and replaced by scar tissue. Over time, the damage is recognized as muscle weakness as it begins limiting function.
In 2010, Duchenne muscular dystrophy experts from around the world, published a paper containing their agreed upon recommendations for care based on evidence from research and clinical experience. Their recommendations, commonly referred to as the "care considerations," address the whole disease including respiratory and cardiac care, diagnostics, orthopedics, rehabilitation, gastrointestinal and nutritional issues, psychosocial interventions and oral care.
The care considerations are intended to raise standards of care, help clinicians provide optimal treatment, and empower families and caregivers by giving them the information necessary to understand appropriate care and a reference to use when they need to advocate to obtain it.
All three parts of the most recent care considerations, published in 2018, are available to access for free using the following links:
Diagnosis and management of Duchenne muscular dystrophy, part 1: Diagnosis, neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869704/
Diagnosis and management of Duchenne muscular dystrophy, part 2: Respiratory, cardiac, bone health, and orthopedic management
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5889091/
Diagnosis and management of Duchenne muscular dystrophy, part 3: Primary care, emergency management, psychosocial care, and transitions of care across the lifespan
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5902408/
Stay updated on the latest Duchenne research news, educational events and programming, and fundraising opportunities.
Please click the button below to schedule a call with a CureDuchenne parent
Meet in person/ Attend an event
Comprehensive care from an experienced health care team is essential to manage the unique needs of an individual living with Duchenne muscular dystrophy. Disease progression, including impact on function, will determine which specialists need to be involved on the team and when they'll initiate specialized care.
Neurologists generally lead health care teams treating individuals with Duchenne. However, the experience each neurologist has in treating Duchenne is widely variable, so we believe it's imperative to seek care from a neurologist with a well-documented history of providing exceptional care for Duchenne muscular dystrophy. Other families in the Duchenne community can be a great resource for recommendations. Suggested items to consider include: his/her ability to answer questions, clarity of instructions provided to manage care, amount of time spent with the patient/family, and overall physician reputation within the healthcare field.
Han C. Phan, MD
Neurologist
Department of Pediatrics
University of Alabama at Birmingham
Birmingham, Alabama, United States
Ana Tesi-Rocha, MD
Pediatric Neurologist
Stanford Neuroscience Health Center
Stanford Health Care
213 Quarry Road
Palo Alto, California, United States
Craig M. McDonald, MD
Physical Medicine And Rehabilitation
Department of Physical Medicine & Rehabilitation
Professor of Pediatrics
Director MDA Neuromuscular Disease Clinics
UC Davis Health
4860 Y St., Suite 1700
Sacramento, California, United States
John Day, MD, PhD
Neurologist, Pediatrician
Department of Neurology
Standford Children's Health
730 Welch Road, 2nd Fl
Palo Alto, California, United States
Leigh Maria Ramos-Platt, MD
Pediatric Neurologist
Muscular Dystrophy Association Neuromuscular Clinic
Children's Hospital Los Angeles
4650 Sunset Blvd.
Los Angeles, California, United States
Nancy Halnon, MD
Pediatrician, Pediatric Cardiologist
Center for Duchenne Muscular Dystrophy at UCLA
BOX 951752, B2-427 MDCC
Los Angeles, California, United States
Perry B. Shieh, MD, PhD
Neurologist
Neuromuscular Program, Neurology
Ronald Reagan UCLA Medical Center
300 UCLA Medical Plaza
Suite B200
Los Angeles, California, United States
Stanley F. Nelson, MD
Geneticist
Center for Duchenne Muscular Dystrophy
BOX 957088
5506A Gonda Cntr
Los Angeles, California, United States
Dennis J. Matthews, MD
Physical Medicine And Rehabilitation
Department of Physical Medicine and Rehabilitation
School of Medicine, University of Colorado
Building 500 - 13001 E. 17th Place
Campus Box C290, Room E135
Aurora, Colorado, United States
Julie Parsons, MD
Pediatric Neurologist
Neuromuscular Clinic
Children's Hospital Colorado
13123 East 16th Ave
Aurora, Colorado, United States
Matt Wicklund, MD
Neurologist
Neurology Clinic
Anschutz Outpatient Pavilion
University of Colorado Hospital
1635 Aurora Court, Suite 4200
Aurora, Colorado, United States
Cristian Ionita, MD
Pediatric Neurologist
Pediatric Neurology
Yale School of Medicine
333 Cedar Street
PO Box 208064
New Haven, Connecticut, United States
Mena T. Scavina, MD
Pediatric Neurologist
Division of Pediatric Neurology
Department of Pediatrics
Nemours/Alfred I. duPont Hospital for Children
1600 Rockland Road
Wilmington, Delaware, United States
Peter B. Kang, MD
Pediatric Neurologist
UF Health Center of Pediatric Neuromuscular and Rare Diseases
University of Florida
2000 SW Archer Rd.
Second Floor
Gainesville, Florida, United States
Richard Finkel, MD
Pediatric Neurologist
Division of Neurology, Department of Pediatrics
Nemours Children's Health System
13535 Nemours Pkwy
Orlando, Florida, United States
Nancy L. Kuntz, MD
Pediatric Neurologist
Ann & Robert H. Lurie Children's Hospital of Chicago
Box 51, 225 E Chicago Avenue
Chicago, Illinois, United States
Larry W. Markham, MD, MS
Pediatric Cardiologist
Pediatric Cardiology
Indiana University School of Medicine
RR 127 PCRD
Indianapolis, Indiana, United States
Katherine Mathews, MD
Pediatric Neurologist
Iowa Neuromuscular Program
University of Iowa Health Care
1317 BT
200 Hawkins Drive
Iowa City, Iowa, United States
Basil Darras, MD
Neurologist
Boston Children's Hospital
Fegan 11 Neurology
300 Longwood Avenue, Fegan, 11th Floor
Boston, Massachusetts, United States
Brenda Wong, MD, MBBS
Pediatric Neurologist
Duchenne Muscular Dystrophy Center
UMass Memorial Children's Medical Center
55 Lake Avenue North
Worcester, Massachusetts, United States
Peter Karachunski, MD
Pediatric Neurologist
Department of Neurology
University of Minnesota Medical School
420 Delaware St. SE
Minneapolis, Minnesota, United States
Randal Charles Richardson, MD
Pediatric Neurologist
Gillette Children's Specialty Healthcare
Children’s Minnesota
200 E University Ave
Saint Paul, Minnesota, United States
Anne M. Connolly, MD
Pediatric Neurologist
St. Louis Children's Hospital
One Children's Place
St. Louis, Missouri, United States
Jeffrey Statland, MD
Neurologist
Department of Neurology
University of Kansas Medical Center
3901 Rainbow Boulevard
Kansas City, Missouri, United States
Darryl C. De Vivo, MD
Pediatric Neurologist
The Neurological Institute of New York
Department of Neurology
College of Physician and Surgeons
Columbia University
710 West 168th Street
Floor: 2, Room: 201
New York, New York, United States
Emma Ciafolini, MD
Pediatric Neurologist
University of Rochester Medical Center
601 Elmwood Avenue, AC-1
Rochester, New York, United States
Robert C. Griggs, MD
Neurologist
University of Rochester Medical Center
601 Elmwood Ave
Box CU 420669
Rochester, New York, United States
Edward Clinton Smith, MD
Pediatric Neurologist
Duke University School of Medicine
3000 Erwin Road
Durham, North Carolina, United States
Cuixia Tian, MD
Pediatric Neurologist
Division of Neurology
Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio, United States
Kevin M. Flanigan, MD
Neurologist, Pediatrician, Molecular Bio...
Center for Gene Therapy,
The Research Institute
Nationwide Children’s Hospital
700 Children's Drive
Columbus, Ohio, United States
Meilan M. Rutter, MD
Pediatrician, Pediatric Endocrinologist
Department of Pediatrics
University of Cincinnati
3333 Burnet Ave
Cincinnati, Ohio, United States
Erika Finanger, MD
Pediatric Neurologist
Division of Neurology
Oregon Health & Science University Hospital
3181 SW Sam Jackson Park Road
Portland, Oregon, United States
Gihan Tennekoon, MBBS, MRCS, LCRP
Neurologist
The Children's Hospital of Philadelphia
3400 Civic Center Blvd.
Philadelphia, Pennsylvania, United States
Hoda Abdel Hamid, MD
Pediatric Neurologist
EMG Laboratory and Neuromuscular Program
Children's Hospital of Pittsburgh of UPMC
Pediatric Neurology
4401 Penn Avenue, 2nd Floor
Pittsburgh, Pennsylvania, United States
John Brandsema, MD
Pediatric Neurologist
Neuromuscular Education Director and Neuromuscular Section Head
Children's Hospital of Philadelphia
3501 Civic Center Blvd.
10th Floor
Philadelphia, Pennsylvania, United States
Paula R. Clemens, MD
Neurologist
Professor and Vice Chair of Neurology
University of Pittsburgh School of Medicine
A506 Scaife Hall
3550 Terrace Street
Pittsburgh, Pennsylvania, United States
Diana Patricia Castro, MD
Pediatric Neurologist
Children's Medical Center
1935 Medical District Drive
Dallas, Texas, United States
Farida Abid, MD
Pediatric Neurologist
Texas Children's Hospital
6621 Fannin Street
Suite 1250
Houston, Texas, United States
Susan Theresa Iannaccone, MD
Pediatric Neurologist
Children's Medical Center of Dallas
The University of Texas Southwestern Medical Center
1935 Medical District Drive
Dallas, Texas, United States
Tim Lotze, MD
Neurologist
Texas Children's Hospital
6701 Fannin Street
Suite 1250
Houston, Texas, United States
Warren A. Marks, MD
Neurologist
Texas Health Fort Worth
1500 Cooper Street
4th Floor
Fort Worth, Texas, United States
Russell J. Butterfield, MD, PhD
Pediatric Neurologist
Clinical Neurosciences Center
University of Utah Health
175 North Medical Drive East
Salt Lake City, Utah, United States
Amy Harper, MD
Pediatric Neurologist
Muscular Dystrophy Association Care Center
Children's Hospital of Richmond at VCU
Children's Pavilion
1000 East Broad Street
Richmond, Virginia, United States
Crystal Proud, MD
Pediatrician, Neurologist
Health Center at Medical Center
850 Southampton Ave
Norfolk, Virginia, United States
Susan D. Apkon, MD
Physical Medicine And Rehabilitation
Rehabilitation Medicine, Center for Clinical and Translational Research
Seattle Children’s Hospital
OB.8.410 - Rehabilitation Medicine
4800 Sand Point Way NE
Seattle, Washington, United States
Craig Campbell, MD
Pediatrician
Children’s Health Research Institute
800 Commissioners Road East
London, Canada
Hugh McMillan, MD, MSc, FRCPC, FAAN
Pediatric Neurologist
Children’s Hospital of Eastern Ontario
401 Smyth Road
Ottawa, Canada
Jean K. Mah, MD, MSc
Pediatric Neurologist
Department of Paediatrics
University of Calgary
2500 University Dr. NW
Calgary, Canada
Kathryn Selby, BSc, MBChB, MRCP, FRCPC
Pediatric Neurologist
BC Children's Hospital
4480 Oak Street
Vancouver, Canada
Ronald Cohn, MD, FACMG
Pediatrician
The Hospital for Sick Children
555 University Avenue
Toronto, Canada
Ronald Smith, MBBS, FRCPC
Pediatrician
Department of Pediatrics
School of Medicine
Queen’s University
76 Stuart St
Kingston, Canada
Maggie Walter, MD
Neurologist
Friedrich-Baur-Institute
Neuromuscular Department of the LMU
Ziemssenstr. 1
Munich, Germany
Eugenio Mercuri, MD, PhD
Pediatric Neurologist
Università Cattolica del Sacro Cuore
Ist. di Neuropsichiatria Infantile
Rome, Italy
Jan Verschuuren, MD
Neurologist
Department of Neurology
Leiden University Medical Center
Albinusdreef 2
Leiden, Netherlands
Rosaline Quinlivan, BSc (Hons), MBBS, DCH, FRCPCH, FRCP, MD
Neurologist
Great Ormond Street Hospital
Children NHS Foundation Trust
Great Ormond Street
London, United Kingdom
Helen P. Roper, MBChB, MD
Pediatrician
Birmingham Children’s Hospitals
Steelhouse Lane
Birmingham, United Kingdom
Stefan Spinty, MD
Pediatric Neurologist
Alder Hey Children’s Hospital
Eaton Road
Liverpool, United Kingdom
Genetic counselors are healthcare professionals with specialized education and experience in the areas of medical genetics and counseling. As a member of a healthcare team caring for a child recently diagnosed with Duchenne muscular dystrophy, genetic counselors are an excellent resource to help families understand the implications of their genetic test results, provide supportive counseling, and serve as patient advocates.
Consistent and frequent physical therapy (PT) is one of the few treatments currently available that's been proven to provide benefit at all ages with a potential to delay disease progression. Duchenne muscular dystrophy requires physical therapists to adopt a completely different approach to care. Because Duchenne is a rare disease, most physical therapists are unfamiliar with the unique treatment needs. Ensuring the physical therapist you work with is well-aware of the special concerns that need to be addressed with Duchenne and able to provide the specific care necessary is crucial.
Our CureDuchenne Cares Certified Physical Therapist program can help you identify a physical therapist with proven knowledge and experience with Duchenne patients.
Can't find a certified Duchenne Physical Therapist in your area? CureDuchenne created the first Duchenne-specific Physical Therapy program and continuing education course for licensed Physical Therapists. We offer training and certification at our CureDuchenne Cares Workshops for PT's in your area interested in expanding their services to help you and other patients with Duchenne.
The CureDuchenne Certified Physical Therapists® who have met the standards to maintain Certification are listed below.
*The CureDuchenne Certified Occupational Therapist program is available here: https://cureduchenne.org/occupational-therapy/
For a description of the Certification programs, please refer to
Rachelle Cherryhomes, PT
Phoenix Children’s Hospital
Gilbert, Arizona
(480) 748-0634
Outpatient Clinic
Kaitlyn DiJohn, PT, DPT, PCS, ATC
Phoenix Children’s Hospital
Phoenix, Arizona
Email: kdijohn@phoenixchildrens.com
Outpatient Pediatric Clinic and Athletic Trainer
Anna Fern-Buneo, PT, MA, C/NDT, PCS
Phoenix Children’s Hospital
Phoenix, Arizona
(602) 933-5064
Spanish bilingual, Outpatient clinic
Karin Gorman, PT, DPT
Phoenix, Arizona
Email: KarinGormanPT@gmail.com
Adrienne Leblanc, PT
Nelson Pediatric Therapy
Scottsdale, AZ
(602) 448-0049
Email: AdrienneLeblanc23@yahoo.com
Home health physical therapy
Maitri Mehta, PT, DPT, C/NDT
Good Job Pediatric PT LLC
Mesa, Arizona
Email: goodjobpediatricpt@gmail.com
Outpatient Pediatric Clinic. Certified Neurodevelopmental and Kinesiotaping treatment.
Monica Winters, PT
Children’s Clinics
Tucson, Arizona
(520) 324-5437
Email: monica.winters@childrensclinics.org
Pediatric physical therapy clinic
Emyleigh Wood, PT, DPT, PCS
Inspire Horizons
Tucson, Arizona
(520) 232-2021
Email: emyleigh.wood@therapygrouptucson.com
Clinic-based, Central and South Tucson locations
Geneshia Edwards, PT, DPT
Pediatrics Plus
Little Rock, Arkansas
Geneshia.Edwards@pediatricsplus.com
Pediatric, Clinic-based PT
Elizabeth Hart, PT, MSPT
Conway Public School District
Conway, Arkansas
harte@conwayschools.net
School based PT and aquatic programs
Heather O’Dell, PT, DPT, MS
Pediatrics Plus
Rogers, Arkansas
ph: (479)966-9521
heather.odell@pediatricsplus.com
Kasey Strack, PT, MSPT
Conway Public School District
Conway, Arkansas
strackk@conwayschools.net
School based PT
Jessica Ballesteros, PT, DPT
Ventura County Dept of Public Health
California Children’s Services
Ventura, California
Bilingual: Spanish
Outpatient Services
Tina Duong, PT, PhD
Stanford University School of Medicine
Palo Alto, California
Jerry Hsu, PT, DPT
California Children’s Services, Riverside County, California
Email: mrjerryhsu@yahoo.com
Rebecca Jorne, PT, DPT
Children’s Hospital of Los Angeles
Los Angeles, CA
Contact: (323) 361 2118
Email: rjorne@chla.usc.edu
Hospital based, Neuromuscular Clinic at CHLA
Anneliese Juhasz, PT, DPT
Children’s Hospital Los Angeles
Los Angeles, California
ajuhasz@chla.usc.edu
APTA Pediatric Clinical Specialist, Neuromuscular clinic
Lianne Messier, PT, DPT
Ventura County Dept of Public Health
California Children’s Services
Ventura, California
Lianne.Messier@Ventura.org
Outpatient Services
Eunice Park, PT, DPT
Children’s Hospital Los Angeles
Los Angeles, California
eunpark@chla.usc.edu
Bilingual (Korean), Neuromuscular Clinic
Jennifer Wallace, PT
Owner and Physical Therapist
Duchenne Therapy Network
Home based services in Southern California
Email: Jennifer@DuchenneTherapyNetwork.com
Tel: (909) 997-3134
Kelly Walsh, PT, DPT
Children’s National Hospital
Washington, DC
kewalsh@childrensnational.org
Donovan J. Lott, PT, PhD
Dept of PT, University of Florida
Gainesville, Florida
Carla Mendoza, MSPT
Clinical Specialist Physical Therapist
Miami Children’s Hospital- Palmetto Bay Outpatient Center
Bilingual: English/Spanish
Amber Sapp, PT, DPT
Thrive Connections
St Pete/Clearwater, Florida
Phone: (615) 482-4993
Email: Ambersapp81@hotmail.com
Home based consultation services and Telehealth available
Claudia Senesac, PT, PhD
Dept of PT, University of Florida
Gainesville, Florida
Elizabeth Jackson Yanow, PT, DPT
Mind And Motion Developmental Centers of Georgia
Suwanee, Georgia (Greater Atlanta Area)
Email: eyanow@mindmotioncenters.com
Outpatient Physical Therapy
Alicyn Turner, PT, DPT
Small Talk Pediatric Therapy
Meridian, Idaho
alicyn@smalltalkpediatrictherapy.com
Pediatric outpatient PT, OT and speech available
Maria Adams, PT, DPT
Union Pediatric Therapy
Terre Haute, Indiana
maria.adams@phrehab.com
Outpatient Pediatric Physical Therapy
Nicole Leinberger, PT, DPT, CKTP
Reach Therapy Services, Inc
Terre Haute, Indiana
Contact: nhybben@reachservices.care
Pediatric outpatient clinic, also licensed in Illinois
Jessica Martin, PT
Northeast Indiana Special Education Cooperative
Noble, LaGrange, DeKalb, Steuben Counties, IN
jmartin@neisec.com
(260)242-2230
School based physical therapy
Shelley Mockler, PT, DSc
University of Iowa Stead Family Children’s Hospital
Iowa City, Iowa
Celina Goncalves, PT, DPT
The Duchenne Program at UMass Medical School
Worcester, Massachusetts
Contact: celina.goncalves@umassmemorial.org
Clinic based physical therapy
Michael Kiefer, PT, DPT
The Duchenne Program at UMass Medical School
Worcester, Massachusetts
Elise Townsend, DPT, PhD
Mass General Physical Therapy
Boston, Massachusetts
Judith A. Koskodan, PT
Children’s Hospital of Michigan; Stilson Specialty Center
Clinton Township, Michigan
Contact: jkoskoda@dmc.org
Neuromuscular Clinic and Outpatient Pediatrics
Judith A. Koskodan, PT
Doctors of Physical Therapy
Almont, Michigan
Contact: (810) 673-1071
jkoskodan@drsofpt.com
Outpatient Pediatric PT
Megan Reid, PT, DPT
Level Eleven Physical Therapy
Howell, Michigan
Contact: Megan.Reid@rehabwithoutwalls.com
(517)546-9000
Rajadurai Viswas, PT
Great Lakes Pain and Injury
Southfield, MI
Contact: VRajadurai@gmail.com
Multi-lingual
Juli Janiszewski, PT, MSPT
Pediatric Therapy Center
Omaha, Nebraska
Contact: juliannej@ptcne.org
Clinic-based pediatric physical, and aquatic therapy
Melanie Armstrong, PT, DPT, ATP
School for Children with Hidden Intelligence
Lakewood, New Jersey
Phone: (732)687-9726
Email: marmstrongpt@gmail.com
Early Intervention PT, Aquatic Physical Therapy, Assistive Technology Professional
Tara Riccardi, PT, DPT
Atlantic Health
Morristown, New Jersey
tara.riccardi@atlantichealth.org
Outpatient PT services
Katharine Wilchek, DPT, PT
Weisman Children’s Rehabilitation
Marlton, New Jersey
(856) 489-4520
kwilchek@weismanchildrens.com
Outpatient and aquatic pediatric rehabilitation
Heather Armijo, DPT
Albuquerque, New Mexico
Contact: Mrs.heatherarmijo@gmail.com
Pediatric Physical Therapy
Hillary Adams, PT, DPT
Hudson Falls, New York
Hudson Falls Central School District
hadams@hfcsd.org
School based physical therapy
Jaclyn Calabrese, PT, DPT
AHRC Nassau (Brookville)
Professional Care Physical Therapy (Patchogue)
jaclyn.calabrese6@gmail.com
School and clinic based PT
Megan DeHey, PT, DPT
AHRC Nassau and Malverne Center for Play & Development
Lynbrook, New York
mdehey38@ gmail.com
Kate Eichinger, DPT, PhD
University of Rochester Medical Center
Rochester, New York
Kelly Fleming, PT, DPT, PCS
DMD Clinic at Stony Brook Children’s Hospital
Stony Brook, New York
Tel: 631-216-8195
Clinic and School based PT
Alyssa McAree, PT
Long Island and New York, NY
New York City Department of Education
aamcaree@hotmail.com
Heather Monette, PT, DPT
Rochester, New York
Rochester City School District
Heather.Monette@rcsdk12.org
Laura Newfield, MSPT
Independent
Long Island, NY
Contact: Laura@iroquoissprings.com
Home, school and clinic based physical therapy
Shree Pandya, DPT
University of Rochester Medical Center (Retired)
Rochester, New York
Sandi Preston, PT
Starting Gait Physical Therapy
Cherry Valley, New York
Tel: (315) 368-4940
Jennie Burrowes, PT, DPT
Pediatric Therapy Network
Fort Hickory, North Carolina
Email: Jennie@ptnnc.com
Outpatient Pediatric PT, OT, Speech clinic
Spanish interpreters available
Laura Case, PT, DPT
Duke University Medical Center
Durham, North Carolina
Janet M. DeJohn, PT
Charlotte Mecklenburg Schools
Charlotte, North Carolina
Email: janet.dejohn@cms.k12.nc.us
(704) 507-1543
School-based Physical Therapist
Tammy Heath, PT
Charlotte-Mecklenburg Schools
Charlotte, North Carolina
Email: tamara.heath@cms.k12.nc.us
NDT Certified, School based physical therapy
Rebecca Lee, PT
Cone Health Outpatient Rehab- Pediatrics
Greensboro, North Carolina
Email: Rebecca.Lee@conehealth.com
Outpatient Pediatric Services
Smita Ankola, PT
Dayton Children’s Hospital
Dayton, Ohio
ph: (937)641-3327
ankolas@childrensdayton.org
Outpatient Multidisciplinary Neuromuscular Clinic
Bilingual: Hindi
Kelly Bonarrigo, PT, DPT
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio
Jessica Doggett, PT, DPT
Dayton Children’s Hospital
Dayton, Ohio
ph: (937)641-3928
Outpatient Neuromuscular Clinic
Amanda Fowler, PT, DPT
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio
Linda Lowes, PT, PhD
Nationwide Children’s Hospital
Columbus, Ohio
Ann McCormick, PT, PhD
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio
Michelle McGuire, PT, MPT
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio
Laura Redman, PT
MetroHealth Medical Center
Cleveland, Ohio
(216) 778-4414
lredman@metrohealth.org
Adult and Pediatric muscle clinic, Equipment assessments
Courtney Goldsbury, PT, DPT
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio
Megan Eskridge, MPT
Norman Public Schools
Norman, Oklahoma
Meskridge@norman.k12.ok.us
School based physical therapy
Amanda Erb, PT, DPT
Theraplay, Inc
Philadelphia Area
Amanda.M.Erb@gmail.com
Clinic based, Early Intervention
Allan Glanzman, DPT
Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
Julianna Kiraly Tracey, PT, MPT
AOT, Inc (division of Theraplay)
Pittsburgh, Pennsylvania
jxtracey@gmail.com
Pediatric therapy
Taylor Nepsa, PT
TEIS, Inc
Pittsburgh, Pennsylvania
(412) 271-8347
PT clinic and Early Intervention
Mary Jones, PT
Prisma Health – Kidnetics
Greenville, South Carolina
(864) 331-1355
Email: Mary.jones@prismahealth.org
Outpatient clinic and Neuromuscular clinic.
Kelly Keller, DPT
Prisma Health – Kidnetics
Greenville, South Carolina
(864) 331-1399
Email: Kelly.keller@prismahealth.org
Outpatient clinic and Neuromuscular clinic.
Kara Arps, PT, DPT, PCS
Monroe Carell Jr. Children’s Hospital at Vanderbilt
Nashville, Tennessee
Email: Kara.m.arps@vumc.org
Pediatric Clinical Specialist, Outpatient Pediatric Physical Therapy
Amanda Smolinski, PT, DPT
Vanderbilt Pediatric Rehabilitation
First Steps, Inc.
Nashville, TN
Email: Amanda.L.Smolinski@Vanderbilt.edu.com
C/NDT Certification
Kassandra Banda, PT, DPT
Children’s Rehabilitation Institute Teleton-USA and
RiverKids Pediatric Home Health
San Antonio, Texas
Email: kbanda@critusa.org
Bilingual-Spanish, Pediatric Outpatient and Home Health PT
Alyssa Cantu, PT
Springbranch ISD
Houston, Texas
Alyssa.Cantu@springbranchisd.com
School based PT services
Marisa Castro, PT
Christus Children’s
San Antonio, Texas
marisa.castro@christushealth.org
Stephanie Childs, PT
Austin, Texas
StephanieChildsPT@gmail.com
Home health PT services
Kayla Clem, PT, DPT, ATP
Neurology and Neuromuscular Center
Denton, Texas
Tel: (972)982-7411
Outpatient Clinic, Assistive Technology Professional
Natalie Eldridge, PT, DPT
CHI St. Joseph
College Station, Texas
Email: neldridge@st-joseph.org
Outpatient Pediatric Physical Therapy
Hayley Fleming, PT, DPT
Christus Children’s
San Antonio, Texas
Tel: (210)427-7316
Hayley.Fleming.hf@gmail.com
Hospital and Home Health PT
Maria Garcia, PT, DPT
Driscoll Children’s Hospital
Corpus Christi, Texas
Email: maria.garcia@dchstx.org
Tel: (361) 694-5570
Spanish Bilingual, Pediatric pelvic floor therapy
Sneha Guwalani, PT, DPT
Texas Children’s
Humble, Texas
Tel: (832) 828-4900
Clinic based pediatric physical therapy
Bilingual: Hindi
Kaileigh Hessler, PT, DPT
Christus Children’s
San Antonio, Texas
Kaileigh.Hessler@Christushealth.org
Maria Karen King, PT
Magnolia Independent School District
Magnolia, Texas
Email: kking@magnoliaisd.org
School based physical therapy
Doug Levine, PT
Owner and Physical Therapist
Growing Places Therapy, PLLC
Austin, Texas
DLevine@growingplacestherapy.com
Tel: (512) 587-5671
Home and school based physical, occupational, and speech therapy
Ashley Morris, PT, DPT
Northwest Independent School District
Justin, Texas
Tel: (713) 703-6124
Email: Ashley.morris.pt@gmail.com
School based physical therapy
Dr. Chaitanya Krishna Mudireddy, PT, DPT
Theramax Physical Therapy
McKinney, Texas
Tel: (972)983-3840
Outpatient and home based PT services
Leslie Nelson, PT, PhD
The University of Texas Southwestern Medical Center
Dallas, Texas
Carol Sandler, PT, DPT
Texas Children’s Hospital
Houston, Texas
Tel: (832)826-2121
Outpatient Clinic physical therapy
Nicole Pasdera, PT, DPT
Neuroworx
Sandy, Utah
(801) 619-3670
Email: nicolep@neuroworx.org
Mandy Butler, PT, DPT
Children’s Hospital of Richmond at VCU
Email: amanda.butler@vcuhealth.org
Neuromuscular Clinic, Adult and Pediatric
Elise Darling, DPT
Children’s Hospital of the King’s Daughters
Norfolk, Virginia
(757) 668-9015
Elise.Darling@CHKD.ORG
Neuromuscular and outpatient clinics
Aileen Jones, PT
VCUHS at Children’s Hospital of Richmond
Richmond, VA
Email: aileenjones@vcuhealth.org
Outpatient Clinic and Research Team
John Nicacio, PT, DPT
Richland School District
Richland, Washington
Email: John.Nicacio@rsd.edu
School-based physical therapy
Leslie Vogel, PT
Seattle Children’s Hospital
Seattle, Washington
Natalie Blonien, PT, DPT
UW Health
Madison, Wisconsin
blonien@pt.wisc.edu
Board-certified neurologic clinical specialist. Clinic based PT.
Shana Sigmund, PT, DPT
Children’s Wisconsin
Milwaukee, Wisconsin
Email: ssigmund@chw.org
Tel: (414) 337-5910
Carrie Shynkaryk, BMR-PT, B.Kin.
Winnipeg area
Children’s Therapy Collective
Email: carrie@childrenstherapycollective.com
In-Home, In-Office and Virtual Physio Appointments
Kaitlyn Ross, PT, MScPT, BKIN
Hamilton area
Hamilton Kids Physio Group
Email: kaitlyn@kidsphysio.ca
Tel: 905 304 0790, 905 516 1134
Viktor Borbély, Physiotherapist
Budapest, Hungary
Budai Gyermekkórház
borbely.viktor@janoskorhaz.hu
+36-1-345-0600
website: http://www.janoskorhaz.hu
Éva Hargitai, Physiotherapist
Budapest, Hungary
Budai Gyermekkórház
+36-1-345-0600
http://www.janoskorhaz.hu
Anett Pálfi, Conductor
Budapest, Hungary
Budai Gyermekkórház
+36-1-345-0600
http://www.janoskorhaz.hu
Anri Human, Physiotherapist
University of Pretoria, South Africa Department of Physiotherapy
Last updated: July 2024
For a comprehensive overview, please visit ClinicalTrials.gov. If you need assistance in understanding clinical trials, we recommend reading our blog post, ‘Decoding Clinical Trials,’ which provides detailed insights to help you navigate and interpret the available information effectively
Founder & CEO of CureDuchenne
Receiving the diagnosis for Duchenne was the scariest time of my life and I know all about the emotions you are feeling. Equipping yourself with the knowledge you need to get the best care for your child is the best thing you can do. Connecting with other families going through the same thing can also be incredibly helpful.
Once I had the confidence that I was going down the right path of care for my son, I founded the nonprofit CureDuchenne and dedicated my life to raising funds to find a cure and to helping other families navigate care and clinical trials. Consider all of us at CureDuchenne as your team that is striving to make the future better for your child. Schedule a call with our experts HERE.
CureDuchenne is a resource you can rely on. We have parents on staff who have children living with Duchenne, a team with years of experience working with families affected by Duchenne, the top medical and scientific advisors, and a vast network of families working together to support each other. Please reach out to us if you need assistance or have any questions. We can help. We want to help. It’s the reason we exist.
CureDuchenne Cares is an interactive education and outreach program designed to provide the community with information, resources, and best practices for managing the challenges of Duchenne to help improve overall quality of life.
We host free family and caregiver workshops across the country to engage the community in hands-on, interactive education presented by expert Duchenne clinicians and researchers.
CureDuchenne
100 Bayview Circle, Suite 5600
Newport Beach, CA 92660
(949) 872-2552
www.cureduchenne.org
