Akron Children's Hospital
One Perkins Square
Akron, Ohio 44308
One Perkins Square
Akron, Ohio 44308
Noelle Buso, LISW-S
Social Work Coordinator
330-543-6014
Hannah Miller, BSN, RN, CPN
Nurse Program Coordinator
330-543-3919
Kathryn Mosher, MD Pediatric PM&R has been treating pediatric patients (0-21 years) and adult patients (>22 years) with Duchenne Muscular Dystrophy 18 years
48
Available in neuromuscular clinic:
Neurology Pediatric - Ian Rossman and Matthew Ginsberg
PM & R Pediatric - Kathryn Mosher
Orthopedics Pediatric - Todd Ritzman
Palliative Care Pediatric - Anne Elliott
Nurse/Clinic Coordinator - Hannah Miller, RN, BSN
Services in neuromuscular clinic:
Genetic Counselor - Catherine Ward Melver
Nutrition - Elizabeth Song Pozderac
OT - Lori Jubara, Katherine Bowers
PT - Karen Peterson
Social Work - Noelle Buso
Available same day but different location:
Cardiology Pediatric - Ira Taub (within same building)
Pulmonary Pediatric - Debbie Toder (within same building)
Endocrine Pediatric - Ryan Heksch (within same building)
Services available same day but different location:
DME - office is located adjacent to Akron Children's Hospital
Speech Therapist - Akron Children's Rehabilitation Services
Wheelchair Specialist - offered through ACH Rehab Services in coordination with DME companies
Research Coordinator - Hillary Tonni
Exon Skipping Therapy/Infusion Center - Akron Children's Infusion Center
Available by referral:
GI/GU Pediatric - Akron Children's Gastroenterology (within same building)
Developmental Pediatrics - Akron Children's Developmental Behavioral Pediatrics
Surgery Pediatric - Akron Children's Pediatric Surgery
Psychology/neuropsychology/counseling - Akron Children's Neurobehavioral Health
Refer to outside center:
Neurology Adult - MDA Clinic @ MetroHealth Medical Center
Cardiology Adult - MDA Clinic @ MetroHealth Medical Center
Pulmonary Adult - MDA Clinic @ MetroHealth Medical Center
PM&R Adult - MDA Clinic @ MetroHealth Medical Center
GI/GU Adult
Orthopedics Adult
Endocrine Adult
Palliative Care Adult
Surgery Adult
225 E. Chicago Avenue
Mailbox #51
Chicago, IL 60611
luriechildrens.org
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
Name: Kristen Alianello, RN
Title: Neuromuscular Nurse Coordinator
Phone number: 312-227-6970
Dr. Nancy Kuntz, Specialty/board certification: Neurology with special competence in Child Neurology
Number of years treating patients with dystrophinopathy: 40+ years
Additional certifications(if applicable): Pediatrics, Clinical Electromyography, Autonomic Medicine
105
Subspecialists available in neuromuscular center:
Neurologist Pediatric - Nancy Kuntz MD; Abigail Schwaede, MD; Bridget McGowan, MD; Kathleen Kennedy, APN
Nurse Coordinator(s) - Kristen Alianello, RN Clinic Coordinator; Susan Daly, RN Clinic Coordinator;Natalie Blackwood, RN; Marisol Costanzo, RN; Nida Aleksa, RN; Abigail Shanahan, RN
Cardiology Pediatric - Katheryn Gambetta MD
Pulmonary Pediatric - Janaki Paskaradevan, MD; Lynn Chelbanowski, RT; Mayra Franchini, RN
Orthopedics Pediatric - Katherine Hentz, APN; Andrea Sanchez, APN; Margaret Ryan
Endocroine Pediatric - Jennifer Miller, MD
Palliative Care - Peter Butzen, APN
Palliative Care Adult
Services available in neuromuscular center:
Nutrition - Jessica Almanza,RD
Genetic Counselor - Lenika De Simone
Orthotics - Sara Beyler
OT - Kristina Stein; Rachel Galant
PT - Katie Hoffman; Laura Brown; Suzanne Greene; Kristin Leonhardt; Jessica Trenkle; Michelle Dincher
Social Work - Debbie Estrada; Nora Barry
Research Coordinator(s) - Olivia Jeong; Molly Gallivan; Ariana Pavlopoulos; Patrick Sohn; Nicole Geanous
MDA Administrative Assistant Sr - Meylin Rodriguez; Brian Reynoso
Child Life Specialist - Samantha Sawalski
Available same day but different location:
Exon Skipping Therapy/Infustion Center - Lurie Children's Hospital Ambulatory Infusion Center
Available different day by referral:
PM&R Pediatric
GI/GU Pediatric
Developmental Pediatrics
Surgery Pediatric
Speech Therapist - Hillary Valentino; Katie Walsh
Psychology/neuropsychology/counseling - Laurie G. Thompson, PhD
Refer to outside center:
DME (vendor, distributor) - NuMotion, National Seating & Mobility, Lifetech
Wheelchair Specialist - NuMotion, National Seating & Mobility, SRAL
1 Children's Way, Little Rock, Arkansas, 72202
https://www.archildrens.org/
Name: Tiffany Boyd RN
Title: Neuromuscular Clinic Coordinator
Phone number: 501-364-1850
Name: Tiffany Boyd RN
Title: Neuromuscular Clinic Coordinator
Phone number: 501-364-1850
Director: Aravindhan Veerapandiyan, MD
Dr. Veerapandiyan (Dr. Panda) Specialty/board certification: Pediatric Neurology. ABPN
Number of years treating patients with dystrophinopathy: 10
180
Subspecialists available in Center:
Services available in Center:
Subspecialists available in a different location but on the same day:
Services available in a different location but on the same day:
Subspecialist available by referral:
Services available by referral:
Outreach clinic:
Arkansas Children's Northwest
2601 Gene George Blvd.
Springdale AR 72762
2800 10th Avenue N
Billings, MT 59107
Name: Lindsay Letendre
Title:MA
Phone number: 406-238-5770
Name: Cameron Parker
Title:APRN
Phone number: 406-238-5770
E. Lynne Wood, MD
Specialty/board certification: APBN Child Neurology
Number of years treating patients with dystrophinopathy: 3.5 as an attending
15
Subspecialists available in neuromuscular clinic:
Neurology Pediatric - Elizabeth Wood, MD
Neurology Adult - Steven Arbogast, DO
Nurse/Clinic Coordinator - Cameron Parker, RN; Lindsay Letendre, MA
Pulmonary Pediatric - Jeri Lysinger, MD and Kaitlyn Frenk, PA
PM & R Adult - Terrence Cahill, MD
GI Pediatric - Jillian Hatfield, PA
Endocrine Pediatric - Margaret Siska, MD
Services available in neuromuscular clinic:
DME (vendor, distributor) - Will Olstad
Nutrition - Christina Erickson
PT - Krista Bakkedahl
Wheelchair Specialist - Will Olstad
Exon Skipping Therapy/Infusion Center - Amber Brien, RN
Subspecialist available same day but different loction:
Cardiology Pediatric - Drs. Neal and Rausch (CHCO providers 1 week a month)
Endocrine Pediatric - Margaret Siska, MD (if bad weather)
Services available same day but different location:
Research Coordinator - Amy Harmala
Available different day by referral:
Neurology Adult - Steven Arbogast, DO
Cardiology Pediatric - Drs. Neal and Rausch
Cardiology Adult
Pulmonary Adult
PM & R Pediatric - Nicholas Fleming, DO; Sue Apkon, MD
PM & R Adult - Terrence Cahill, MD
GI/GU Adult
Orthopedics Adult
Endocrine Adult
Surgery Pediatric and Adult
Refer to outside center:
PM&R Pediatric - Sue Apkon, MD CHCO (does outreach in MT)
Orthopedics Pediatric - Heather Hansen Ortho Montana
Developmental Pediatrics - John King and Laura Fiorcella at St.Vincent Hospital
Genetic Counselor - Shodair Children's Hospital, Decode Duchenne
Orthotics - Treasure State Orthotics, Alpine DME
300 Longwood Avenue
Boston, Massachusetts 02115
www.childrenshospital.org
Contact: Anellys Preito
Phone Number: 617-355-8235
Contact: Regina Laine
Phone Number: 617-355-8235
Partha Ghosh, MD Neurology (special qualication in child neurology) and ABEM (American Board of Electrodiagnostic Medicine)
Pediatrics,Adult, Internal or Family medicine, Adult/Pediatric neurology,Adult/Pediatric PM&R
Dr. Ghosh is a pediatric neurologist but also sees adults
Dr. Ghosh has treating pediatric and adult patients with Duchenne muscular dystrophy: 10 years
Regina Laine, NP Clinic Coordinator
140-145
Subspecialists available in neuromuscular clinic:
Services available in neuromuscular clinic:
Subspecialist available same day but different location:
Services available in neuromuscular clinic:
Subspecialists available different day by referral:
Care provided to Adult:
300 Medical Plaza, Suite B200
Los Angeles, CA 90095
cdmd.ucla.edu
Name: CDMD clinic (Return patients)
Title: Front Desk
Phone number: 310-794-1195
Name: Moreno, Paola
Title: Admin Coordinator (Peds and Adult patients)
Name: Jennifer Koo
Title: Nurse Coordinator
Phone number: 310-794-1195; 310-405-9824
Stanley Nelson, MD - Specialty/board certification: Professor-in-Residence, Human Genetics, Pathology and Laboratory Medicine, and Neurology. Board-certified pediatrician
Number of years treating patients with dystrophinopathy: 20+ years
Perry Shieh, MD - Neurology. Board-certified pediatrician
Number of years treating patients with dystrophinopathy: 20+ years
130
Subspecialists available in neuromuscular clinic:
Services available in neuromuscular clinic:
Subspecialists available same day but different locaton:
Subspecialist available different day by referral:
Services available different day by referral
4650 Sunset Blvd #82 Los Angeles, CA 90027 (mailing address)
chla.org
Name: Elvira Sanchez
Title: Medical Assistant/ Clinical Care Associate
Phone number: 323.361.4081.
Name: Arlene Deseo
Title: RN, BSN, Neuromuscular Care Manager
Phone number: 323.361.5919
Center director:
Dr. Leigh Ramos-Platt, Neurology (special qualification in child neurology), Child Neurophysiology (Board certified in Neurology, Child Neurology or PM&R)
Experience: 6-11 years treating pediatric (0-21yo) and 1-5 years treating adult (>22yo) patients
160
Medical Team
Leigh Maria Ramos-Platt, MD (lead)
Nurse care manager: Arlene Deseo, BSN, RN
Surgical Team
Lindsay Andras, MD (lead)
Nurse care manager: Arlene Deseo, BSN, RN
PT
OT
Social Work
Registered Dietician
34th St. and Civic Center Blvd
Philadelphia, Pennsylvania 19104
Children's Hospital of Philadelphia is a Certified Duchenne Care Center with Clinical Research Designation
Robyn Ruggia/ Tiffany Fauntleroy: 215-590-4719
Robin Ruggia, Program Coordinator
215-590-4719
Dr. Susan Matesanz has been treating pediatric patients (0 -21 years) with Duchenne muscular dystrophy for 5 years
Dr. John Brandsema has been treating pediatric patients (0 -21 years) with Duchenne muscular dystrophy for 15 years
170
Children's Hospital of Philadelphia is a Certified Duchenne Care Center with Clinical Research Designation
Subspecialists available in neuromuscular clinic:
Neurology Pediatric – Susan Matesanz; John Brandsema; Sabrina Yum; Andrea O'Brien
Nurse/Clinic Coordinator(s) – Robyn Ruggia;Taylor Kaschak; Alexa Palmer
PM & R Pediatric – Francis Eusebio; Nanichi Ramos-Roldan
Endocrine Pediatric – David Weber
Subspecialists available same day but different location:
Cardiology Pediatric – Carol Wittlieb-Weber; Kimberly Lin
Pulmonary Pediatric – Oscar H. Mayer; Kristen Miller
Orthopedics Pediatric - Christine Goodbody; David Spiegel
Subspecialists available different day by referral:
Palliative Care Pediatric
Developmental Pediatrics
Surgery Pediatric
Services available in neuromuscular clinic:
Genetic Counselor – Brianna Gross
Nutrition – Paige Ketbachi
Orthotics – Darin Oskinson
OT – Timothy Estilow; Lindsey Busarello
PT – Allan Glanzman; Mallory Gardener; Ranit Liebermann
Social Work – Julianne Meiser
Child Life Specialist – Caitlin Adiletto
Licensed Practicing Nurse – Jessica DiSalvo
Coordinator – Tiffany Fauntleroy
Wheelchair Specialist – Allan Glanzman (in clinic); Deborah Humphl (by referral with adaptive equipment clinic)
Research Coordinator(s) – Angela Collingwood; Sarah Mccague
Exon Skipping Therapy/Infusion Center – Ashley Chabert-Paine, Jessica DisSalvo Orsini Home Infusion, CHOP Home Infusion
Services available same day but different location:
Psychology/neuropsychology/counseling – Collette Gramzslo
Services available different day by referral:
Speech Therapy
DME (vendor, distributor) – Harry J. Lawall & Son; Orthologix; Boston Orthotics & Prosthetics
850 Southampton Avenue
Third Floor
Norfolk, VA 23510
www.chkd.org
Name: Tanicia Johnson, RN
Title: Specialty Program Coordinator
Phone number: 757-668-9729
Name: Tanicia Johnson, RN
Title: Specialty Program Coordinator
Phone number: 757-668-9729
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.
64
Subspecialists available in neuromuscular center:
Neurology Pediatric & Adult - Crystal M. Proud, MD
Nurse/Clinic Coordinator - Tanicia Johnson, RN
PM & R Pediatric & Adult - Dana Dasher, MD
Pulmonary Pediatric - Cynthia Epstein, MD
Services available in neuromuscular center:
Genetic Counselor - Rachel Nicely, MS, CGC
Nutrition - Hannah Bullington, RD
OT - Holly Casper, OT
PT - Elise Darling, DPT
Social Work - Morgan Nunes, MSW
Wheelchair Specialist - Jeff Shinn
Research Coordinators - Melinda Griggs, Ann Walker, Melissa Freeman and Erin Smith
Subspecialists available same day but different Location:
Developmental Pediatrics - Sarah Chagnon, MD
Available different day by referral:
Cardiology Pediatric - Alexander Ellis, MD
GI/GU Pediatric - Orhan Atay, MD
Endocrine Pediatric - Eric Gyuricsko, MD
Palliative Care Pediatric - Ami Mehta, MD
Developmental Pediatrics - Sarah Chagnon, MD
Surgery Pediatric - Marcia Kuhn, MD
DME (vendor, distributor) - Numotion, National Seating and Mobility
Genetic Counselor - Rachel Nicely, MS, CGC
Orthotics - CHKD Splint Clinic, Coastal Prosthetics
Psychology/neuropsychology/counseling - Nancy Como-Lesko, PhD
Social Work - Morgan Nunes, MSW
Speech Therapist - CHKD Therapy Services
9000 W. Wisconsin Ave, Milwaukee, WI 53226
www.chw.org
Name: Claudia Krimmer
Title: Muscular Dystrophy Clinic Patient Care Coordinator/Scheduler
Phone number: (414) 607-5280 or (877) 607-5280.
Name: Laurie Jenson, RN
Title: MDA Clinic Coordinator
Phone number: 414 266-3464
Nancy Bass, MD
Specialty/board certification: Neurology with special qualification in Child Neurology
Number of years treating patients with dystrophinopathy: 20 years
45
Available in neuromuscular center:
Neurology Pediatric - Nancy Bass, MD; Sarah Oswald, MD
Palliative Care Pediatric - Carrie Hecox, NP
Neuromuscular Pediatric - Virginia Kaperick, MD
Nurse/Clinic Coordinator(s) - Laurie Jenson; Mariah Miller; Claudi Krimmer
Orthopedics Pediatric - Rachel Lenhart, MD
Services available at neuromuscular center:
Genetic Counselor - Emily Singh
Social Work - Elizabeth Horning
Research Coordinator - Rebecca Rehborg
Available by Referral:
Neurology Adult - Dominic Fee, MD
GI/GU Pediatric - multiple providers
Endocrine Pediatric - multiple providers
Developmental Pediatrics - multiple providers
Surgery Pediatric - multiple providers
PT - Shana Sigmound, Sara Girolami
Wheelchair specialist - multiple providers
Speech Therapist - multiple providers
Exon Skipping Therapy/Infusion Center
Available by Referral
Nutrition
OT
Psychology/neuropsychology/counseling
Speech
13123 East 16th Ave
Aurora, CO 80045
childrenscolorado.org
Name: Maria Martinez
Title: Administrative Service Coordinator
Phone number: 720-777-2806
Name: Hattie Foster, RN
Title: Nurse Coordinator
Phone number: 720-777-2806
Center Directors:
Sue Apkon, MD and Michele Yang, MD
Specialty/board certification: PM&R and Neurology
Number of years treating patients with dystrophinopathy: Apkon 25 years and Yang 15 years
Additional certifications(if applicable): Apkon: PMR and Pediatric Rehabilitation Medicine
Yang: Board certified in neurology with special qualification in child neurology, in electromyography (with ABEM), and in neuromuscular medicine
190
Subspecialists available in Center:
Services available in Center:
Subspecialists available same day but different location:
Services avaialable same day but different location:
Subspecialist available by referral:
Services available by Referral:
Refer to outside center UCH:
2401 Gillham Rd
Kansas City, MO 64108
www.childrensmercy.org
Heidi Lockridge 816-302-3387
Heidi Lockridge 816-302-3387
Diana Marchese, MD Pediatric PM&R; has been treating pediatric patients (0-21years) with Duchenne Muscular Dystrophy 3.5 years
95
Subspecialists available in Neurmuscular Center:
Services available in Neuromuscular Center:
Available same day but different location:
Available by referral (different location, different day):
Refer to outside center:
111 Michigan Avenue NW, Washington, DC 20010
Name: Physical Medicine and Rehabilitation (PMR) Scheduling Line
Phone number: 202-476-3094
Name: Kathleen Smart
Title: Program Lead
Phone number: 202-476-6193
Diana Bharucha-Goebel, MD, Specialty/board certification: Neurology with Special Qualification in Child Neurology; Subspecialty -Neuromuscular
Number of years treating patients with dystrophinopathy: 15 years
65
Subspecialists available in neuromuscular center:
Services available in neuromuscular center:
Available only by referral:
3333 Burnet Ave
Cincinnati, OH 45229
http://www.cincinnatichildrens.org/service/c/neuromuscular/default/
Name: Clinical Concierge
Phone number: 513-803-3000 option 1
Name: Beth Dupont
Title: Program Manager
Phone number: 513-803-7631
Name: Kristan Koo
Title: Program Coordinator
Phone number: 513-803-0410
Cuixia Tian, MD
Specialty/board certification: ABPN
Number of years treating patients with dystrophinopathy: >20 years
278
Subspecialists available in Neuromuscular Center:
Services available in Center:
Available same day but different location:
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
2200 Children's Way
Suite 5230 DOT
Nashville, TN 37232
615-875-8500
https://www.childrenshospitalvanderbilt.org/clinic/duchenne-muscular-dystrophy-dmd
Name: Kali Barbalena
Title: Program Coordinator
Phone number: 615-875-8500
Name: Rachel Cox, RN, BSN, CPN
Title: Nurse Coordinator
Phone number: 615-875-1215
Clinic Co-Directors:
Jonathan Soslow, MD - Specialty/board certification: Pediatric Cardiology
Number of years treating patients with dystrophinopathy: 10
Additional certifications (if applicable): Director of Cardiac MRI
W Bryan Burnette, MD - Specialty/board certification: Pediatric Neurology and Neuromuscular Medicine
Number of years treating patients with dystrophinopathy: 18
Additional certifications (if applicable): Director Vanderbilt Cure SMA Center
Andrew Sokolow, MD - Specialty/board certification: Pediatric Allergy/Immunology/Pulmonary Medicine
Number of years treating patients with dystrophinopathy: 6
136
Sub-specialists available in neuromuscular clinic:
Services available at neuromuscular clinic:
Sub-specialists available same day but different location:
Service available same day but different location:
Available different day by referral:
3000 Erwin Road
Durham, NC 27710
www.dukemedicine.org
Name: Patricia Sexton
Title: RN
Phone number: 919-613-6832
Name: Patricia Sexton
Title: RN
Phone number: 919-613-6832
Dr. Katz, MD, PhD Pediatric Neurology 2 years treating pediatric patients (0-21yo) and 2 years treating adult (>22yo) patients with Duchenne Muscular Dystrophy
150
Subspecialists available in neuromuscular center:
Neurology Pediatric – Natalie Katz, MD, PhD
Nurse Clinic Coordinator(s) - Patricia Sexton, RN
Cardiology Pediatric - Jennifer Li, MD; Erin Shea, MD
Pulmonary Pediatric - Mai El Mallah, MD
Endocrine Pediatric - Robert Benjamin, MD
Palliative Care Pediatric - Amy Lee, MD
Services available in neuromuscular center:
DME (vendor, distributor) - NuMotion
Genetic Counselor - Terralyn Schmidt
Nutrition - Austin Lobitz
Orthotics - Ashley Meadows (Hanger)
OT - Multiple
PT -Laura Case and several others
Social Work - Regina Miller
Wheelchair Specialist - Nick Gallegly/NuMotion
Sub-specialsist available same day but different location:
Cardiology Adult - Paul Rosenberg, MD
Services available same day but different location:
Orthotics - Ashley Meadows w/Hanger Clinic
Speech Therapist - multiple
Exon Skipping Therapy/Infusion Center - Natalie Katz, MD
Available by referral:
Neurology Adult - w/adult MDA Clinic
Cardiology Pediatric - Jennifer Li, MD; Erin Shea, MD
Cardiology Adult - Paul Rosenberg, MD
Pulmonary Adult - w/adult MDA Clinic
GI/GU Pediatric & Adult - multiple providers or seen locally
Orthopedics Pediatric - Anthony Catanzano, MD; Robert Lark, MD
Endocrine Adult - multiple providers or seen locally
Palliative Care Pediatric - Amy Lee, MD
Palliative Care Adult - Multiple providers or seen locally
Surgery Pediatric - Multiple
Adult Surgery - Multiple
Developmental Pediatrics - Bryn Salter, MD
Speech – Multiple
DME (vendor, distributor) - NuMotion
Orthotics - Ashley Meadows w/Hanger Clinic
OT - several
PT - Laura Case & several others
Wheelchair specialist - Nick Gallegly w/NuMotion
Research Coordinator(s) - Brittany Nave, Stephanie Thera, Randy Smith, Amanda Fristoe
Exon Skipping Therapy/Infusion Center - Natalie Katz, MD
1000 East Broad Street Richmond, VA 23298
https://www.vcuhealth.org/
Name |
Audrey Spradling, RN |
Title |
Neuromuscular Nurse Clinic/Coordinator |
Phone number |
804-828-2467 |
Name |
Audrey Spradling, RN |
Title |
Neuromuscular Nurse Clinic/Coordinator |
Phone number |
804-828-2467 |
Amy Harper, MD, Neurology (Board certified: Special qualification in child neurology and Neuromuscular Medicine); Director Children's Hospital of Richmond Pediatric Neuromuscular Clinic. She has over 20 years treating pediatric patients and adult patients.
Nicholas Johnson, Neurology, AVP Research, Director of the Muscular Dystrophy Translational Program, Board Certifications: Neurology and Neuromuscular Medicine
Mathula Thangarajh, MD, Neurology (Board certified: Special qualification in child neurology and Neuromuscular Medicine)
51
Subspecialists available in neuromuscular center:
Neurology Pediatric - Amy Harper, MD; Mathula Thangarajh, MD; Nicholas Johnson, MD
Neurology Adult 2nd & 4th week - Nicholas Johnson, MD
Nurse/Clinic Coordinator - Audrey Spradling, BS, RN
Cardiology Pediatric - Frank Raucci, MD
Pulmonary Pediatric - Ronald Williams, MD; Justin Brockbank, MD
GI/GU Pediatric, Gagnon 2nd and 4th week - Narendra Vadlamudi, MD; Flora Szabo, MD, Katie Gagnon, PNP
PM & R Pediatric - Eugenio Monasterio, MD; Olivier Rolin, MD
Orthopedics Pediatric - Victoria Kuester, MD
Endocrine Pediatric 1st and 3rd week - Mareen Thomas, MD
Palliative Care quarterly young adult - Daniel Cannone, MD
Developmental Pediatrics - Amy Harper, MD and Jennifer Accardo, MD
Services available in Center:
DME - Andy Lewandowski
Orthotics - Ksenia Major
PT - Amanda Butler; Aileen Jones
Social Work - Felicia Davis
Speech - Kiera Berggren (in clinic); Multiple Pediatric CHOR therapists (referral)
Wheelchair Specialist - Andy Lewandowski
Educational Specialist - Georgina Fowler
Available By Referral:
Neurology Adult - Nicholas Johnson, MD
Cardiology Adult - Sangeeta Shah, MD
Cardiology Pediatric - Frank Raucci, MD
Pulmonary Pediatric - Ronald Williams, MD
Pulmonary Adult - Catherine Grossman, MD
PM & R Pediatric - Eugenio Monasterio, MD; Oliver Rolin, MD
GI/GU Pediatric - Narendra Vadlamudi, MD; Flora Szabo, MD; Katie Gagnon, PNP
GI/GU Adult - George Smallfield, MD; Adam Klausner, MD
Orthopedics Pediatric - Victoria Kuester, MD
Orthopedics Adult - Jessica Frankenhoff, MD; Jonathan Isaacs, MD; Douglas Boardman, MD
Wilhelm Zuelzer, MD; Stephen Kates, MD
Endocrine Pediatric - Maureen Thomas, MD
Endocrine Adult - VCU Endocrine
Palliative Care Pediatric - Daniel Cannone, MD
Palliative Care Adult - Erin Alesi, MD
Developmental Pediatrics - Amy Harper, MD; Jennifer Accardo, MD
Surgery Pediatric - Jeffrey Haynes, MD
Surgery Adult - Stephanie Goldberg, MD
DME (vendor/distributor) - Andy Lewandowski
OT - multiple, Children’s Hospital Richmond CHOR
PT - Amanda Butler; Aileen Jones
Psychology/neuropsychology/counseling - Chad Johnson, Jennifer Accardo, MD
Speech - Kiera Berggren; Multiple Pediatric CHOR therapists (referral)
Wheelchair specialist - Andy Lewandowski
Orthotics - Ksenia Major
35 Michigan NE, Ste 3003 Grand Rapids, MI 49503
www.helendevoschildrens.org/
Name: Natalie Rogers
Title: Nurse Coordinator
Phone number: 616-267-2500; fax referral to 616-267-2501
Name: Natalie Rogers
Title: Pediatric Neurology Nurse Coordinator
Phone number: 616-267-2500
Jena Krueger, MD - Specialty/board certification: Neurology with a special certification in Child Neurology
Number of years treating patients with dystrophinopathy: 7
65
Sub-specialists available in neuromuscular clinic:
Services available in neuromuscular clinic:
707 N. Broadway
Baltimore, MD 21205
Name: Angie Lasseth
Title: Clinic coordinator
Phone number: 443-923-9525
Name: Michael Munchel
Title: RN
Phone number: 443-923-9525
Doris Leung, MD, PhD, Specialty/board certification: Adult neurology
Number of years treating patients with dystrophinopathy: 15
146
Subspecialists available in neuromuscular center:
Services available in neuromuscular center
Available by referral:
730 Welch Road, Palo Alto, CA 94304
Name: LPCH Scheduling department
Phone number: 650-723-0993
Name: Jessica Guzman, RN
Phone number: 650-723-0993
Ana Carolina Tesi Rocha MD
Specialty/board certification: American Board of Psychiatry and Neurology (ABPN) Child neurology
Number of years treating patients with dystrophinopathy: 24 years
80
Subspecialists available in neuromuscular center:
Neurologist Pediatric - John W. Day, MD, PhD; Ana Carolina Tesi Rocha, MD; Jenna M. Klotz, MD; Jacinda Sampson, MD, PhD; Cara Piccoli, MD
Neurologist Adult - John W. Day, MD, PhD; Jacinda Sampson MD, PhD
Nurse/Clinic Coordinator - Jesica Guzman, RN, PHN; Rachel Estep, RN
Cardology Pediatric - Beth Kaufman, MD
Pulmonary Pediatric - Mymy Buu, MD
Pulmonary Adult - Michelle Cao, MD
Services available in neuromuscular center:
OT – Jennifer Low, OTD, OTR/L; Jamie Toto OTD, OTR/L
PT - Tina Duong, PhD, MPT; Sally Dunaway Young, PT, DPT; Richard Gee, MPT
Social Work
Speech – Miranda Clements, M.S., CCC-SLP; Beatrice O'Gorman, M.S., CCC-SLP
Nutrition - Sophia Fabbrizo
Genetic Counselor - Carly Siskind MS, LCGC
Advanced Practice/Nurse Practitioner - Karolina Watson, MS, PNP
Research Coordinator - Meng Yao
Available day but different location:
Cardiology Adult - Matthew Wheeler, MD
Pulmonary Pediatric - Mymy Buu, MD
Pulmonary Adult - Michelle Cao, MD
PM & R Adult - Kara Flavin, MD
GI/GU Adult - Linda Nguyen, MD
Orthopedics Pediatric - Lawrence Rinsky, MD, James Gamble, MD, Meghan Imrie, MD
Endocrine Pediatric - Laura Bachrach, MD
Research Coordinator - Meng Yao
Available by referral:
Cardiology Adult - Matthew Wheeler, MD
Pulmonary Pediatric - MyMy Buu, MD
Pulmonology Adult - Michelle Cao, MD
Physical Medicine and Rehabilitation Adult - Kara Flavin, MD
GI/GU Adult - Linda Nguyen, MD
Orthopedics Pediatric – Lawrence Rinsky, MD, James Gamble, MD, Meghan Imrie, MD
Endocrine Pediatric - Laura K. Bachrach, MD
Palliative Care Pediatric - Barbara Sourkes, MA
Developmental Pediatric - Christian C. Ambler, PhD
Psychology/neuropsychology/counseling - Gayle K. Deutsch,PhD(adult),Chris Ambler, PhD(ped)
Genetic Counselor - Carly Siskind MS, LCGC
Nutrition - Sophia Fabbrizo
*Note: Some providers see patients at both centers and some only see patients at either the adult or pediatric clinic.
Stanford Adult DMD Clinic
Stanford Neuromuscular Program, Adult Clinic
Hours 8:30am to 4:30 pm. Tuesdays and Thursdays
Stanford Neuroscience Health Center
213 Quarry Road, 1st Floor
Palo Alto, CA 994394
Website: https://stanfordhealthcare.org/medical-clinics/neuromuscular-program.ht
Appointments: 650-723-6469
General Questions about clinic and program: Jennifer Fisher 650-497-5934
700 Children's Dr
Columbus, OH 43205
nationwidechildrens.org
Name: Neuromuscular Admin Team
Phone number: 614-722-2203 option 3
Name: Neuromuscular Nursing Team
Phone number: 614-722-2203 option 2
Dr. Megan Waldrop - Specialty/board certification: Neurology with special qualification in Pediatric Neurology, Neuromuscular Medicine
Number of years treating patients with dystrophinopathy: 7
389
Subspecialists available in neuromuscular clinic:
Services available in neuromuscular clinic:
Available by referral:
Refer to outside center:
1600 Rockland Road, Wilmington, DE 19803
Name: Willis Brown / Amanda Hopkins
Title: Coordinators
Phone number: 302-651-5930
Name: Willis Brown
Title: Clinic Coordinator
Phone number: 302-651-5930
Manish Kumar, MD - Specialty/board certification: ABPN Child Neurology
Number of years treating patients with dystrophinopathy: 1
46
Subspecialists available in neuromuscular center:
Services available in neuromuscular center:
Subspecialists available same day at multiple locations
Available different day by referral:
500 University Drive
Hershey, PA 17033
Name: Olivia Wanner
Title: Scheduling Coordinator
Phone number:717-531-0003 ext 282193
Name: Paula Cameron, BSN RN CCRN
Title: Clinical Case Manager
Phone number:717-531-0003 ext 282670
Ashutosh Kumar MD, Specialty/board certification: Pediatric Neurology
Number of years treating patients with dystrophinopathy: 11+ years
67
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
1919 E Thomas Road
Phoenix, Arizona 85016
www.phoenixchildrens.org
Name: Kelly Lucyk, RN
Title: Nurse Specialty Care Coordinator, Neuromuscular Program
Phone number: 602-933-0970
Name: Kelly Lucyk, RN
Title: Nurse Specialty Care Coordinator, Neuromuscular Program
Phone number: 602-933-0970
Saunder M. Bernes - Specialty/board certification: pediatric neurology
Number of years treating patients with dystrophinopathy:36
208
Sub-specialists available in neuromuscular center:
Services available in neuromuscular center:
Subspecialist available different day by referral:
Services available different day by referral:
Refer to outside center:
575 Riley Hospital Drive
MSA 1
Indianapolis, IN 46202D
https://www.rileychildrens.org/
Name: Debbie Lemay RN
Title: Clinical Nurse Coordinator-Navigator
Phone number: 317 948-1313
Name: Debbie Lemay BSN, RN, CPN / Katelyn Webb BSN, RN
Title: Clinical Nurse Coordinator-Navigator / Clinical Nurse Coordinator
Phone number: 317 948-1313 / 317-948-6663
Marcia Felker, MD
Specialty/board certification: Neurology with special qualifications in child neurology. Clinical neurophysiology, EMG focus
MDA/Neuromuscular Care Center Director has been treating pediatric patients (0-21 years) with Duchenne Muscular Dystrophy for 13 years
143
Sub-specialists available in neuromuscular clinic:
Services available in neuromuscular clinic:
Available same day but different location:
Subspecialists available only by referral:
Services available only by referral:
4800 Sand Point Way NE
Seattle, WA 98105
seattlechildrens.org
Title: neuromuscular schedulers
Phone number: 206 987 6678
Name: Kara Smith, RN
Title: Rehabilitation nurse
Phone number: 206 987 6678
Seth Perlman, MD - Specialty/board certification: Neurology with Special Qualification in Child Neurology and Neuromuscular Medicine (ABPN)
Number of years treating patients with dystrophinopathy: 12
Additional certifications(if applicable): American Board of Electrodiagnostic Medicine
Jaclyn Omura, MD - Specialty/board certification: Physical Medicine and Rehabilitation and Pediatric Rehabilitation Medicine
Number of years treating patients with dystrophinopathy: 5
97
Subspecialists available in neuromuscular center:
Care Coordinator: Kara Smith (primary RN contact for clinic)
Program Coordinator: Siserra Taylor
Services Available in neuromuscular center:
Services available in a different location but on the same day:
Available different day by referral:
Bellevue, Federal Way, Billing MT, Anchorage Alaska
100 Nicolls Road
Stony Brook, NY 11794
www.stonybrook.edu
Name: Kayla Vander Schuyt
Title: RN Coordinator
Phone number: 631-216-1985
Name: Kayla Vander Schuyt
Title: RN Coordinator
Phone number: 631-572-1902
Peter Morelli, MD Pediatric
Specialty/board certification: Cardiologist
Number of years treating patients with dystrophinopathy: 6
43
Subspecialist available in neuromuscular clinic:
Neurology Pediatric & Adult - Simona Treidler, MD
Cardiology Pediatric - Peter Morelli, MD
Pulmonary Pediatric - Barry Diener, MD
GI/GU Pediatric - Michele Tobin, MD
Endocrine Pediatric - Diana Kaplan, MD
Palliative Care Pediatric - Grace Kerr, MD
Nurse/Clinic Coordinator - Kayla Vander Schuyt
Services available in neuromuscular clinic:
Genetic Counselor - Linda Buttice
Nutrition - Rachel Valentin
Orhotics - Jack Ritieni
PT - Sarah Berkowitz
OT - Rachel Morturano
Social Work - Amanda Schnettler
Available different day by referral
Orthopedics Pediatric - James Barsi, MD
Psychology/neuropsychology/counseling - Thomas Preston, PhD
Social Work - Amanda Schnettler
Wheelchair Specialist - Lauren Varriale
601 Elmwood Ave, Box 673, Rochester, NY 14642
https://www.urmc.rochester.edu/neurology/clinical-services/neuromuscular/clinics/duchenne-muscular-dystrophy-clinic.aspx
Scheduling staff 585-275-2559
Joan Mountain, RN 585-274-0099 Or Debra Guntrum, FNP 585-275-2559
Emma Ciafaloni, MD, FAAN - Robert C. and Rosalyne H. Griggs Professor in Experimental Therapeutics of Neurologic Disease Professor of Neurology, Pediatrics and Obstetrics and Gynecology, Associate Chair of Research, Director Pediatric Neuromuscular Medicine
Specialty/board certification: Neurology
Number of years treating patients with dystrophinopathy:26
Additional certifications(if applicable): Neuromuscular Medicine
180
Specialists Available in Neuromuscular Clinic
Neurology Pediatric and Adult - Emma Ciafaloni, MD; Bo Lee, MD; Samuel Mackenzie, MD; Brianna Brun, MD; Debra Guntrum, FNP; Heather Romeiser, FNP; Katherine Ochoa, FNP
Nurse/Clinic Coordinator - Joan Mountain, RN and Jennifer Sellars, RN
Pulmonary Pediatric - Karen Voter, MD; Daniel Sheehan, MD, PhD
Pulmonary Adult - Katherine Krol, MD
Palliative Care Pediatric - Paul Vermillion, MD
Services Available in Neuromuscular Clinic
Genetic Counselor - Jordan Bontrager
PT - Kate Eichinger and Nicole Koopman
Social Work – Victoria Dean
Research Coordinator - Patty Smith and Kim Hart
Available same day but different location
Speech Therapist
Wheelchair Specialist
Social Work - Elizabeth Cochrane
Available by Referral
Cardiology Pediatric - Michael Collins, MD; Nadar Attalah, MD
Cardiology Adult - Jeffrey Alexis, MD
Pulmonary Adult - David Trawick, MD, PhD
PM & R Pediatric & Adult
GI/GU Pediatric and Adult
Orthopedics Pediatric - Susan Nelson, MD
Orthopedics Adult - Paul Rubery, MD
Endocrine Pediatric - Christa Ward, PA
Palliative Care Adult - Robert Horowitz, MD
Developmental Pediatrics - Amy Vierhile, NP
Surgery Pediatric
Surgery Adult - Rabih Salloum, MD
Services Available by Referral
DME (vendor, distributor)
Nutrition
Orthotics
OT
Exon Skipping Therapy/Infusion Center
UC Davis Medical Center Department of Physical Med & Rehab
4860 Y Street, Suite 1700
Sacramento, CA 95817
916-734-7041
UC Davis Physical Medicine and Rehabilitation
916-734-7041
UC Davis Physical Medicine and Rehabilitation
Tanya Escay, RN 916-734-7041
Dr. Craig M. McDonald, Adult PM&R, Neuromuscular medicine (Board certified in Neurology, Child Neurology or PM&R), Pediatric PM&R (Board certified in PM&R); He has >36 years treating pediatric patients (0-21yo) and >36 years treating adult (>22yo) patients.
145
Subspecialists available in neuromuscular clinic:
Nurse/Clinic Coordinator: Tanya Escay, RN
Cardiology Pediatric and Adult - Dr. Jonathan Dayan
Pulmonary Pediatric - Dr. Sanjay Jhawar and Dr. Ambika Chidambaram
PM & R Pediatric and Adult - Dr. Craig McDonald
Endocrine Adult - Dr. Prasanth Surampudi
Services available in neuromuscular clinic:
Nutrition - Stacy Garrison, RD and Elana Schulman, RD
PT - Kingsley Manoharan, PT
Social Worker
Research Coordinator
Available different day by referral:
Neurology Pediatric and Adult
Pulmonary Adult
Endocrine Pediatric
GI/GU Pediatric and Adult
Orthopedics Pediatric and Adult - UC Davis Orthopaedics Dept
Palliative Care Pediatric and Adult
Developmental Pediatrics
Surgery Pediatric
Surgery Adult
DME (vendor, distributor)
Genetic Counselor
Orthotics - UC Davis Orthotics (Depends on insurance)
Psychology/Neuropsychological/Counseling
PT
Speech Therapist
Wheelchair Specialist
Exon Skipping Therapy/Infusion Center
1825 4th Street, 6A
San Francisco, CA 94158
Name: Marcie Cordova Name: Raquel Guillen
Title: practice coordinator Title: new patient coordinator
Phone number: 415-514-2133 Phone Number: 855-722-8273
Name: Audrey Glancy Malaer
Title: RN
Phone number: 415-514-8848
Jonathan B. Strober, M.D., Specialty/board certification: Neurology (special qualification in child neurology)
Number of years treating patients with dystrophinopathy: 30
90
Subspecialists available in neuromuscular center:
Neurologist Pediatric - Jonathan B. Strober, M.D.; Alexander Fay, MD
Nurse/Clinic Coordinator(s) - Audrey G. Malaer
Cardiology Pediatric - Scott Soifer, M.D.
Pulmonary Pediatric - Gwynne Church, M.D.
GI/GU Pediatric - Maura Howe, NP
Services available in neuromuscular center:
Nutrition - Makiko Omori
OT - Natalie Sweetwood
PT - Sherina Fong
Social Work - Desiree Dieste
Research Coordinator - Ria Guerrero4
Available same day but different location:
Orthopedics Pediatric - Mohammad Diab, MD
Endocrine Pediatric - Roger Long, MD
Surgery Pediatric
Services available same day but different location:
Exon Skipping Therapy/Infusion Center - UCSF Benioff Children's Hospital Pediatric Infusion Center
Available different day by referral:
Neurologist Adult - Madina Tugiz
Cardiology Adult
PM & R and Adult
Pulmonary Adult
Palliative Care Adult - Multiple available
Endocrine Pediatric - Roger Long, MD
Endocrine Adult
GI/GU Adult
Orthopedics Pediatric - Mohammad Diab, MD
Orthopedics Adult
Developmental Pediatric
Surgery Pediatric
DME (vendor, distributor)
Psychology/neuropsychology/counseling
Genetic Counselor
Orthotics
Speech
Wheelchair specialist
Exon Skipping Therapy/Infusion Center - UCSF Benioff Children's Hospital Pediatric Infusion Center
200 Hawkins Dr.
Iowa City, IA 52242
General scheduling center PH: 319-356-2229
Christina Trout, RN, MSN
PH: 319 356 4017
Dr. Katherine Mathews, Neurology
Specialty/board certification: Neurology and Psychiatry; Child Neurology
Number of years treating patients with dystrophinopathy: >30 years
190
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
231 E Chestnut Street
Louisville, Kentucky 40202
www.nortonchildrens.com
Name: Jackie Boyd
Title: Neuromuscular Nurse Navigator
Phone number: 502-494-9137
Name: Jackie Boyd
Title: Neuromuscular Nurse Navigator
Phone number: 502-494-9137
Amanda Rogers and Arpita Lakhotia
Amanda Rogers: Child Neurology with Board Certification in Neurology with Special Qualification in Child Neurology and Board Certification in Neuromuscular Disorders
Arpita Lakhotia: Child Neurology with Board Certification in Neurology with Special Qualification in Child Neurology
51
Subspecialist available in neuromuscular clinic:
Neurology Pediatric - Amanda Rogers, MD
Cardiology Pediatric - Terri Massey, APRN & Amy DiPiertro, MD
Pulmonary Pediatric - Ronald Morton, MD; Scott Bickel, MD
PM & R Pediatric - Stephanie Barton, DO
Orthopedics Pediatric - Wendy Warren, PA
Endocrine Pediatric - Prasanthi Gandham, MD
Nurse Coordinator - Jackie Boyd
Services available in neuromuscular clinic:
Genetic Counselor - Preeti Desaigoudar
Nutrition - Robin Weller, RD, LD
PT - Natalie Renfrow, PT and Katelyn McNamara-Kays
Social Work - Lisa Coleman, LCSW
Research Coordinator - Lauren Evancyk
Subspecialist available same day different location:
Orthopedics Pediatric - Wendy Warren, PA
Endocrine Pediatric - Prasanthi Gandham, MD
Services available same day different location:
Exon Skipping Therapy/Infusion Center - In same building as our clinic
Subspecialists available different day by referral:
GI/GU Pediatric - Lynette Gillis, MD and Angelena Edwards, MD
Endocrine Pediatric - Prasanthi Gandham, MD
Palliative Care Pediatric - Dustin Dillon, MD
Devlopmental Pediatrics - We refer to anyone in our Developmental Peds Group
Surgery Pediatric - We refer to anyone in our Pediatric Surgery Group
Services available different day by referral:
OT - Norton Children's OT
Psychology/neuropsychology/counseling - Margaret Calvery, PhD
Speech Therapist - Norton Children's ST
Wheelchair Specialist - Norton Children's Wheelchair Clinic
Refer to outside center:
PM & R Adult - UL PM&R
GI/GU Adult - UL GI
Orthopedics Adult - Norton Orthopedics
DME (vendor, distributor) - NuMotion, National Seating & Mobility
Orthotics - Hanger Clinic
Wheelchair specialist - Frazier Rehab Seating Clinic
175 N Medical Dr, Salt Lake City, UT 84132
https://healthcare.utah.edu/neurosciences/neurology/muscular-dystrophy-clinic/
Coordinated Scheduling
Phone number: 801.587.0462
Danica Hobson, Program Coordinator - 801.231-3599
Russell Butterfield, MD, Pediatric Neurology
Specialty/board certification: Pediatric neurology, Neuromuscular
Number of years treating patients with dystrophinopathy: 15
44 at PCH and 63 at UU
Subspecialists available in neuromuscular clinic:
Neurology Pediatric - Russell Butterfield, Stephanie Manberg, Chris Espinoza and Michelle Loftus
Neurology Adult - Russell Butterfield
Nurse/Clinic Coordinator - Danica Hobson
Pulmonary Pediatric - one pulmonologist is available during the first NM clinic of the month
Pulmonary Adult UU - Jeanette Brown
Services available in neuromuscular clinic:
Genetic Counselor - Kristen Wong
Nutrition - Grace Gough, Susan Fitzgerald and Becky Hurst-Davis
OT UU - Dallin Sudbury
PT - Amelia Wilson, Melissa McIntyre
Psychology/neuropsychology/counseling - Melissa Dixon
Social Work - Taylor Berhow and Kiffanie Kinghorn
Research Coordinator - Stacy Stauffer
Subspecialists available different day by referral:
Cardiology Pediatric - Ashwin Lal and Primary Children's Cardiology - UCHAMPS clinic
Cardiology Adult - Kevin Whitehead and Daniel Cox
Pulmonary Pediatric - Brian McGinley, Kati Tsukahara and Primary Children's Pulmonology
PM & R Pediatric - Primary Children's PM&R Clinic
GI/GU Pediatric - Primary Children's GI Clinic
Orthopedics Pediatric - Primary Children's Orthopedics
Endocrine Pediatric - Primary Children's Endocrinology
Palliative Care Pediatric - Dominic Moor and Rainbow Kids at Primary Children’s
Devlopmental Pediatrics - University Develpmental Assessment Clinics (UDAC)
Surgery Pediatric - Primary Children's Pediatric Surgery
Services available different day by referral:
Orthotics
OT - Dallin Sudbury
Exon Skipping Therapy/Infusion Center - Primary Children's RTU
Refer to outside Center:
PM & R Adult
GI/GU Adult
Orthopedics Pediatric - Shriner's Hospital
Orthopedics Adult
Endocrine Adult
Palliative Care Adult
Surgery Adult
Orthotics - Shriner's Hospital
OT UU - Intermountain Rehabilitation Services or Home Health
Wheelchair Specialist - Shriner's Hospital
Battle Building, 1204 W. Main St., Charlottesville, VA 22908
https://childrens.uvahealth.com/services/developmental-disabilities-and-delays
Patient and Family Centered Scheduling, 434-924-0123
Lorie Nouwairi, lln4a@virginia.edu, Clinical Nurse Coordinator, 434-924-0123
Dr Rebecca J. Scharf, MD, Pediatrics, Board certified in Neurodevelopmental and Behavioral Pediatrics; Joint Appointments in Neurology and Public Health. She has 12-15 years treating pediatric patients (0-21yo) and 12-15 years treating adult (>22yo) patients.
Dr. Anna Jesus, MD, Pediatrics, Developmental and Behavioral Pediatrics, she has 5-10 years experience treating patients.
Dr. Ryan Cappa, MD, Neurology, Neuromuscular Neurology, he has 5-10 years experience treating patients.
Alison Sturgill, PNP, Developmental Pediatrics, she has 5-10 years experience treating patients.
52
Subspecialists available in Center:
Neurologist Pediatric - Dr. Rebecca Scharf, Dr. Kristen Heinan, Dr. Ryan Cappa
Neurologist Adult - Dr. Sarah Jones, Dr. Matthew Elliott
Cardiology Pediatric - Dr. Mike McCulloch, Dr. Tom L’Ecuyer
Cardiology Adult - Dr. Mike McCulloch, Dr. Tom L’Ecuyer
Pulmonary Pediatric - Dr. Andrea Garrod, Dr. Rich Kravitz
PM & R Pediatric - Dr. Rebecca Scharf
PM & R Adult - Dr. Geoff Smith
GI/GU Pediatric - Dr. Steve Borowitz
Palliative Care Pediatric - Joy Miller, MSN, RN, CPNP-PC, CPN and Patrick Ahern MSN, RN
Orthopedics Pediatric - Dr. Mark Abel, Dr. Keith Bachmann
Endocrine Pediatric - Dr. Melissa Schoelwer and Dr. David Repaske
Developmental Pediatrics - Dr. Rebecca Scharf, Alison Sturgill PNP, Dr. Anna Jesus
Services available in Center
DME - Various vendors and distributors based on need
Nutrition - Eva Manthe
Orthotics - Kevin King, Duane Strong
OT - Catherine Braun
PT - Patricia Payne, Marc Hengartner
Genetic Counselor - Shelley Townder
Psychology/neuropsychology/counseling - Alisa Bahl, PhD; Laura Shaffer PhD, Haley Stephens PhD, Emily Gonzalez, PhD
Speech - Anita Bailey and Polly Bickley
Social Work - Elizabeth Phipps
Wheelchair Specialist – Several
Pediatric Dentistry - Dr. Ted Gailbraith
Subspecialists available in a different location but on the same day:
Neurology Pediatric - Dr. Rebecca Scharf, Dr. Kristen Heinan, Dr. Ryan Cappa
Cardiology Adult - Dr. Mike McCulloch, Dr. Tom L'Ecuyer
Pulmonary Adult - Dr. Eric Davis
GI/GU Adult - Dr. Steven Cohn
Orthopedics Adult - Drs. Mark Abel, Adam Shimer, Frank Shen
Endocrine Adult - Dr. Meg Crook
Palliative Care Adult - Dr. William Timmins
Surgery Pediatric - Dr. Gene McGahren, Dr. Jeffrey Gander
Surgery Adult - Various, based on need
Services available in a different location but on the same day:
Sleep Center - Dr. Pearl Yu
4401 Penn Avenue
Pittsburgh, PA 15224
www.chp.edu
Name: Josh Hamm
Title: RN
Phone number: 412-692-8259
Name: Josh Hamm
Title: RN
Phone number: 412-692-8259
Dr. Hoda Abdel Hamid - Specialty/board certification: Neurology: Neuromusculat
1-Neurology with special qualifications in child Neurology
2- Neuromuscular Medicine
3- Clinical Neurophysiology
Number of years treating patients with dystrophinopathy:17 years
Additional certifications(if applicable): MSc, FAAN
111
Subspecialists available in neuromuscular clinic:
Neurology Pediatric - Hoda Abdel-Hamid, MD
Nurse/Clinic Coordinators - Joshua Hamm, RN
Pulmonary Pediatric - Jane Taylor, MD
PM & R Pediatric - Jason Edinger, DO
Orthopedics Pediatric - Ozgur Dede, MD
Endocrine Pediatric - Natalie Baldauff, MD
Services available in neuromuscular clinic:
DME (vendor, distributor) - Blackburn's
Genetic Counselor - Kelsey Bohnert
PT- Casey Matthews
Social Work - Nichole Zimmerman
Wheelchair specialist - Jack McAlpine
Research Coordinator(s) - Heather DiCostanzo
Subspecialists available same day but different location:
Palliative Care Pediatric - Carol May, MD
Subspecialists available different day by referral:
Cardiology Pediatric - Shawn West, MD
GI/GU Pediatric - Aliessa Fira, MD
Services available different day by referral:
Exon Skipping Therapy/Infusion Center - Pam Hackett
2350 Stemmons Frwy, Ste 5074
Dallas, Texas 75207
www.childrens.com
Name: Sandra Turner
Title: Scheduler
Phone number: 214-456-2768
Name: Connie Choudhary, RN
Title: Neuromuscular nurse
Phone number: 214-456-2768
Kaitlin Batley, MD
Specialty/board certification: Pediatric neuromuscular medicine; board certification in Neurology with special qualification in pediatric neurology, neuromuscular medicine, and electrodiagnostic medicine
Number of years treating patients with dystrophinopathy: 8
167
Subspecialists available in neuromuscular center:
Services available in neuromuscular center:
Subspecialists available different day by referral:
Services available different day by referral:
1675 Highland Ave
Madison, WI 53792
uwhealthkids.org
Name: Hayley Lindsey, RN
Title: Clinical RN Navigator
Phone number: 608-890-6500
Name: Hayley Lindsey, RN
Title: Clinical RN Navigator
Phone number: 608-890-6500
Jennifer Kwon, MD - Specialty/board certification: Neurology with Special Qualification in Child Neurology
Number of years treating patients with dystrophinopathy: 25+
Cameron Crockett, MD - Specialty/board certification: Neurology with Special Qualification in Child Neurology, Neuromuscular Medicine, and Electrodiagnotic Medicine
Number of years treating patients with dystrophinopathy: 4
34
Subspecialists available in neuromuscular center:
Services available in neuromuscular center:
Available different day by referral:
One Children's Way
St. Louis, Missouri 63110
www.stlouischildrens.org
Name: Neuromuscular Office
Phone number:314-362-6981
Name: Leslie Rodick
Title: RN, BSN, Clinical Nurse Coordinator
Phone number:314-273-0353
Craig Zaidman, MD - Specialty/board certification: Adult/Pediatric neurology
Number of years treating patients with dystrophinopathy: 21
160
Subspecialist available in neuromuscular center:
Services available in neuromuscular clinic:
Subspecialist available same day but different location:
Services available same day but different location:
1 Long Wharf Drive
2nd Floor, Pediatric Specialty Clinic
New Haven, CT 06510
https://www.ynhh.org/childrens-hospital/find-a-location.aspx
Name: Louise Lanouette
Title: RN
Phone number: 203-688-4221
Name: Louise Lanouette
Title: RN
Phone number: 203-688-4221
Dr. Cristian Ionita, Child Neurology
Specialty/board certification: Neuromuscular Medicine and Neurology with special qualifications in Child Neurology
Number of years treating patients with dystrophinopathy: 19
24
Subspecialists available in neuromuscular center:
Services available in neuromuscular center:
Services available same day but different location:
Subspecialists available only by referral:
Services Available by referral: