Locate A Provider

 

If you are a healthcare provider with expertise and/or interest in RYR-1-related diseases, please contact us. 

 

United States: 

 

CALIFORNIA

 

Los Angeles, CA

 

Perry Shieh, M.D. Ph.D.

 

Telephone: 310-794-1195

Fax: 310-794-7491

 

UCLA Medical Center

UCLA Neurological Services 
300 UCLA Medical Plaza B-200
Los Angeles, CA 90095

 

Orange County, CA

 

Tahseen Mozaffar, MD FAAN, FANA & Namita Goyal, MD

 

Telephone: (714) 456-2332

Fax: (714) 456-5997

Email: mozaffar@uci.edu

 

UC Irvine-MDA ALS and Neuromuscular Center

UC Irvine Medical Center’s Manchester Pavilion

200 S. Manchester Avenue, Suite 110

Orange, CA 92868

 

Palo Alto, CA

 

John W. Day, MD, PhD

Karolina Watson, Nurse Practitioner

Jennifer Fisher, Neuromuscular Community Outreach Liaison

 

Telephone/ New Patients/Adults: 650-723-6469

Telephone/ New Patients/Children:650-723-0993

Telephone for Neuromuscular Clinic’s Outreach Liaison: 650-497-5934

Fax: 650.725.4197

Email:  jnfisher@stanford.edu
 

Division of Neuromuscular Medicine

Stanford Neuroscience Health Center

213 Quarry Road

Mail Code 4841

Palo Alto, CA 94304

Telephone:  650-497-5934

 

San Diego, CA

 

Chamindra Konersman, MD

 

Telephone: 858-966-5819

 

Adult and Pediatric Neuromuscular Specialist

UCSD, VA San Diego Health System, and Rady Children's Hospital

3020 Children’s Way MC 5009

San Diego, CA 92123

 

 

COLORADO

 

Aurora, CO

 

Julie A. Parsons, MD

Alison Ballard, PNP (Clinic Coordinator)

 

Telephone: 720-777-8723

Fax: 720-777-7285

Email: julie.parsons@childrenscolorado.org

 

Children's Hospital Colorado Neuromuscular Clinic

13123 E. 16th Ave, B-155

Aurora, CO 80045

Melissa Wright, MD, PhD

Alison Ballard, PNP (Clinic Coordinator)

Telephone: 720-777-8723

Fax: 720-777-7285

Email: melissa.wright@childrenscolorado.org

 

Matthew P. Wicklund, MD

 

Office Phone: 303-724-2188

Fax: 303-724-2202

Email: matthew.wicklund@UCDenver.edu

 

University of Colorado School of Medicine

Department of Neurology

12631 East 17th Avenue

Room 5113 C Campus Box B185

Aurora, CO 80045

 

 

MARYLAND

 

Baltimore, MD 

 

Kathryn Wagner, MD, PhD 

Angie Lasseth (Clinic Coordinator)

 

Telephone:  443-923-9525

Email:  Lasseth@kennedykrieger.org

 

Center for Genetic Muscle Disorders

707 North Broadway

Baltimore, MD 21205

 

Web address:  http://kennedykrieger.org/patient-care/patient-care-centers/center-genetic-muscle-disorders/programs-services

 

Thomas O. Crawford, MD

Theresa Cox (Clinic Coordinator)

 

Telephone: 410-955-6435

Email: thutson2@jhmi.edu

 

The Johns Hopkins Center for Inherited Neuromuscular Disease

600 N. Wolfe St.

Meyer 5-119

Baltimore, MD 21287

 

Web address: http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/muscular_dystrophy/

 

 

Bethesda, MD

 

Carsten G. Bönnemann, MD & Sandra Donkervoort, MS,CGC 

 

Telephone: 301-496-0272

Fax: 301-480-3007

Email: Sandra- donkervoorts@mail.nih.gov

 

National Institutes of Health

National Institute of Neurological Disorders and Stroke Neurogenetics Branch Neuromuscular and Neurogenetic Disorders of Childhood Section

10 Center Drive

CRC, Room 12N210, MSC 1477

Bethesda, MD 20892-1477

 

 

 

MASSACHUSETTS

 

Boston, MA

 

Alan Beggs, PhD  

 

Telephone:  617-919-2169

Fax: 617-730-0786
Email: BeggsLab@enders.tch.harvard.edu

 

Boston Children’s Hospital

3 Blackfan Circle

CLSB 15031

Boston, MA 02115

 

Beggs Lab website: www.childrenshospital.org/research-and-innovation/research-labs/beggs-laboratory

 

Dr. Basil Darras

Shani Barnett (Clinic Coordinator)

 

Telephone for Dr. Basil Darras:  617-355-8235

Telephone for Shani Barnett:  617-355-8235

 

Boston Children's Hospital

Department of Neurology

Fegan, 11th Floor

Boston, Massachusetts 02115

 

 

 

MISSOURI

 

Columbia, MO

 

Raghav Govindarajan, M.D.

 

Telephone: 573-882-3135

 

Department of Neurology

1020 Hitt Street DC 120.00

Columbia Missouri 65201

 

 

 

NEW JERSEY

 

Morristown, NJ

 

Jahannaz Dastgir, DO

 

Telephone: 973-971-5700

Fax: 973-290-7417

Email: jahannaz.dastgir@atlantichealth.org

 

Goryeb Children's Hospital

100 Madison Ave.

Morristown, NJ 07960

 

 

 

NEW YORK

 

Buffalo, NY

 

Nicholas J. Silvestri, MD, FAAN

Rachel Shepard (Clinic Coordinator)

 

Office phone: 716-932-6080

Fax: 716-332-4245

 

Department of Neurology, University at Buffalo Jacobs School of Medicine & Biomedical Sciences

1001 Main St

Buffalo, NY 14203

 

New York, NY

 

Michio Hirano, MD

Kris Engelstad (Clinical Coordinator)

Telephone: 212-406-6834

Email: ke4@columbia.edu

 

Columbia University Medical Center

630 West 168th Street

P & S 4-423

New York, NY 10032

 

 

 

OHIO

 

Columbus, OH

 

Kevin Flanigan, MD

Rita Peirano (Clinic Coordinator) 

 

Telephone: 614-722-2203

Email: rita.peirano@nationwidechildrens.org

 

MDA and Neuromuscular Clinics (adult and pediatric patients) & Center for Gene Therapy

Nationwide Children’s Hospital

700 N. Children’s Drive

Columbus, Ohio  43205

 

 

 

PENNSYLVANIA

 

Philadelphia, PA

 

Sabrina Yum, MD, Livija Medne, MS, CGC, John Brandsema, MD, Elizabeth Kichula, MD, PhD, & Vanessa Battista, RN, MS, CPNP-PC

Shanel Aldridge – program coordinator

 

Telephone: 215-590-1719

Fax: 215-590-1771

Email: neuromuscular@email.chop.edu

 

Children's Hospital of Philadelphia

3401 Civic Center Blvd

Philadelphia, PA 19104

 

 

Pittsburgh, PA

 

Paula Clemens, MD, Rebecca Molcza, CRNP (Adult patients only)

 

Telephone: 412-692-4920

Fax: 412-647-8398

Email: molcrs@upmc.edu

 

University of Pittsburgh Medical Center

S520 Biomedical Science Tower

200 Lothrop Street

Pittsburgh, PA 15213

 

 

 

TEXAS

 

Houston, TX

 

Lydia Sharp, M.D.

 

Telephone: 713-798-2273

Coordinator (Lauren Lee): 713-798-1373

Fax: 713-798-7709

Email: LydiaJane.Sharp@bcm.edu

Coordinator email (Blanca Arevalo): Blanca.Arevalo@bcm.edu

 

Baylor College of Medicine

Department of Neurology

7200 Cambridge St. Suite 9A

Houston, Texas 77030

 

 

 

 

Australia:

 

Perth

 

Phillipa Lamont, MD & Mark Davis, PhD, FFSc, RCPA 

 

Email: Phillipa- phillipa.lamont@health.wa.gov.au

Royal Perth Hospital, Dept of Neurology

 

Mark Davis

Telephone: +61 8 6383 4219 (Mark)

Fax: +61 8 9346 4029 (Mark)  

Email: Mark- mark.davis@health.wa.gov.au

Neurogenetics Unit

Department of Diagnostic Genomics

PathWest Laboratory Medicine WA

Level 2, PP Building  

QEII Medical Centre   

Hospital Avenue

Nedlands WA 6009

 

 

Queensland

 

Bradley Launkonis, MD

 

Telephone: 61-7-3365-4301

Email: b.launikonis@uq.edu.au

Website: https://www.uq.edu.au/sbms/staff/bradley-launikonis

 

School of Biomedical Sciences

The University of Queensland

BNE, QUEENSLAND 4072

 

 

 

 

Brazil: 

São Paulo

 

Umbertina Conti Reed

Edmar Zanoteli (Clinic Coordinator)

 

Telephone: 11- 26617878

 

Hospital das Clínicas, Faculdade de Medicina da USP

Av. Dr. Enéas de Carvalho Aguiar, 255

05403-010 - São Paulo

 

 

 

 

Canada:

 

Toronto

 

James Dowling, MD, PhD & Kim Amburgey, MS, CGC 

 

Telephone: (416) 813-7654 x 301707

Fax: (416) 813-6334

Email: James- james.dowling@sickkids.ca, Kim- kim.amburgey@sickkids.ca

 

Hospital for Sick Children

Division of Neurology

555 University Avenue

Toronto, ON M5G 1X8

 

 

 

 

France: 

 

Grenoble

 

Isabelle Marty, PhD

 

Telephone: 33 (0)4 56 52 05 71

Fax: 33(0)4 56 52 05 72

Email: isabelle.marty@ujf-grenoble.fr

 

Grenoble Institut des Neurosciences

Inserm U836 – Eq. 4 Muscle et Pathologies

Bat. EJ Safra

Chemin Fortuné Ferrini

38700 La Tronche

 

Julien Fauré, PhD

 

Telephone: 04 76 76 55 73
Fax: 04 76 76 56 64
Email: jfaure1@chu-grenoble.fr


Laboratoire de Biochimie Génétique et Moléculaire
Institut de Biologie et Pathologie
CHU Grenoble
CS10217
38043 GRENOBLE Cedex 09

 

Eric Esteve, MD

 

Telephone: (+33) (0) 476 637 537  

Fax: (+33) (0) 476 637 178

Email: eric.esteve@ujf-grenoble.fr

Website: http://hp2.ujf-grenoble.fr

 

Laboratoire HP2, INSERM U1042

Facultés de Médecine et de Pharmacie

Institut Jean Roget, BP170

38042 Grenoble Cedex

 

 

Montpellier

 

Alain Lacampagne, PhD

 

Telephone: + 33 467 415 228 / +33 622 273 657 

Fax: +33 467 415 242

 

UMR CNRS 9214 – Inserm U1046

Physiologie et Médecine Expérimentale du Coeur et des Muscles

CHU Arnaud de Villeneuve

34295 Montpellier Cedex 05

 

 

Paris 

 

Ana Ferreiro, MD, PhD

 

Telephone: + 33 1 57277959 

Fax: + 33 1 57277953

Email: ana.b.ferreiro@gmail.com

 

Bâtiment Buffon

4 Rue Marie-Andrée Lagroua Weill-Hallé

75205 Paris cedex 13

 

Consultant Neurologist

Neuromuscular Disorders Reference Centre, Paris-Est

Institut of Myology

Pitié-Salpêtrière Hospital, Paris & INSERM Research Director 

Co-director, "Pathophysiology of striated muscles" lab

Unité de Biologie Fonctionnelle et Adaptative (BFA), 

UMR 8251 Université Paris Diderot-CNRS

Campus Paris-Rive Gauche

 

 

 

 

Netherlands:

 

Nijmegen

   

Nicol C. Voermans, MD, PhD

 

Telephone: 0031 24 3616600

Fax: 0031 24 3541122

Email: nicol.voermans@radboudumc.nl

Email Center: spierziekten.neuro@radboudumc.nl

 

Radboud university medical centre

P.O. Box 9101, 6500 HB Nijmegen (935)

The Netherlands

www.radboudumc.nl

 

 

South Africa:

Cape Town

Jo Wilmshurst

 

Telephone: 021 658 5434

Fax: 021 689 1287

Email: jo.wilmshurst@uct.ac.za

 

Red Cross War Memorial Children’s Hospital

University of Cape Town

South Africa

 

 

 

Spain:

 

San Sabastian

 

Ainara Vallejo Illarramendi, PhD

 

Telephone: +34 943 006128

Email: ainara.vallejoillarramendi@osakidetza.net

 

Group of Neuromuscular Diseases

Neuroscience Area, Biodonostia Institute

Paseo Dr. Begiristain s/n

20014 San Sebastian, Spain

 

 

 

 

Switzerland:

 

Basel

 

Susan Treves, MD

 

Telephone: 0041612652373

Email: susan.treves@unibas.ch

 

Dept anesthesia and biomedicine

Basel university hospital

Basel, Switzerland

 

 

 

 

United Kingdom:

 

London

 

Heinz Jungbluth, MD, PhD, MRCP, MRCPCH 

 

Telephone: 0044 20 71883998 (secretary - Wanda)

Telephone: 0044 20 71884005 (direct line)

Fax: 0044 20 71884629 

On-Call Mobile: 0044 07500120135 

Email: Heinz.Jungbluth@gstt.nhs.uk

Email: Heinz.1.Jungbluth@gkcl.ac.uk

 

Reader and Consultant in Paediatric Neurology

Children's Neuroscience Centre

Newcomen Centre at St Thomas'

F01 - Staircase D South Wing

St Thomas' Hospital

Westminster Bridge Road

London SE1 7EH

 

Randall Division for Cell and Molecular Biophysics

Muscle Signalling Section

King's College London

Clinical Neuroscience Division, IoP,

King's College London

 

 

Professor Francesco Muntoni, FRCPCH, FMedSci

 

Telephone: 44207 905 2111           
Fax: 44207 905 2832

Email: f.muntoni@ucl.ac.uk
Email Assistant: janet.nicholas@ucl.ac.uk

 

UCL Institute of Child Health & Great Ormond Street Hospital for Children (GOSH)

30 Guilford Street, London WC1N 1EH, UK 

 

Dubowitz Neuromuscular Centre and MRC Centre for Neuromuscular Diseases

Head, Developmental Neuroscience Programme

Contact: 

P.O. Box 13312, Pittsburgh, PA 15243

© 2014 by The RYR-1 Foundation. 

Phone:

412-529-1482

The information provided by The RYR-1 Foundation on this site or by any links to this site is for educational purposes only. It should not be interpreted as a recommendation for a specific treatment plan, product, medical, or healthcare provider. Use of this web site does not replace medical consultations with a qualified professional to meet the individual’s needs. In addition, medical information can change rapidly; therefore, some information may be out of date, and/or contain inaccuracies or typographical errors. Ultimately, if you have concerns about your health, particularly RYR-1 related diseases, you should consult your health care provider.