The leukodystrophies are rare – and it seems like the physicians that are knowledgeable on the leukodystrophies are even rarer. The ULF is here to help you find a physician! We have knowledgable Medical and Scientific Advisory Board physicians as well as list of physicians that treat leukodystrophies, and we are actively adding new people with the hopes of identifying at least one specialist in each of the 50 United States. We do have a limited amount of international physicians as well, and it will be a goal to have an additional list including global physicians in the future.
| State | Name | Title | Organization | Phone Number |
|---|---|---|---|---|
| Alabama | Richard Salazar, MD | Neurologist | The Jackson Clinic 1801 Pine Street, Suite 202 Montgomery, AL 36016 | (334) 293-8082 |
| Alabama | Richard Diethelm, MD | Neurologist | Neurology East at St. Vincent's East 48 Medical Park Drive East, Ste. 351 Birmingham, AL 35235 | (205) 836-9366 |
| Alaska | David M. Koeller, MD | Clinical Genetics, Pediatrics | AK Genetics Clinic 3601 C Street, Suite 322 Anchorage, AK 99503 | (907) 269-3430 |
| Arizona | Kara Lewis, MD | Pediatric Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Clarimar Borrero-Mejas, MD | Pediatrics, Pediatric Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | John F. Kerrigan, MD | Seizure Monitoring, Epilepsy surgery, Refractory Epilepsy, Pediatrics, Pediatric Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Saunder M. Bernes, MD | Pediatrics, Pediatric Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Robert D. Little, MD | Pediatric Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Korwyn L. Williams, MD, PhD | Neurophysiology, ICU Monitoring, Epilepsy, Child Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Allen M. Kaplan, MD | Rehabilitation, Pediatrics, Pediatric Neurology, Neurofibromatosis, Neuro-Oncology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Reena G. Rastogi, MD | Pediatric Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Angus A. Wilfong, MD | VNS therapy, Seizure disorders, Laser therapy, Ketogenic diet, Epilepsy surgery, Epilepsy, EEG monitoring | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Brian L. Appavu, MD | Pediatric Stroke, Epilepsy | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Varina L. Boerwinkle, MD | Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Daniel J. Crawford, DNP | Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Richard E. Frye, MD, PhD | Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Eric V. Hastriter, MD | Neurology | Phoenix Children's Southwest Valley Specialty Care Center 1665 N. Avondale Blvd. Avondale, Arizona 85392 | (602) 933-0005 |
| Arizona | Carolyn E. Hickman, PhD, RN, CPNP | Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Randa G. Jarrar, MD | Pediatrics, Pediatric Neurology, Pediatric EMG, Intraoperative Monitoring, Epileptology, Epilepsy | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Michael C. Kruer, MD | Pediatric Movement, Disorders Neurogenetics | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Iris Marku, PNP | Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arizona | Matthew M. Troester, DO | Sleep Medicine, Pediatric Epilepsy, Neurophysiology, Child Neurology | Phoenix Children's Hospital - Main 1919 E. Thomas Rd. Phoenix, Arizona 85016 | (602) 933-1000 |
| Arkansas | Know of a provider in Arkansas? Fill out the form on the right! | |||
| California | Keith Van Haren, MD | Leukodystrophies, Autoimmune Diseases of the Nervous System, Neurology - Child Neurology | Stanford University Medical Center Child Neurology 730 Welch Rd Ste 206 Palo Alto, CA 94304 | (650) 723-0993 |
| California | Raman Sankar, MD, PhD | Pediatric Neurology | Children's Health Center 200 UCLA Medical Plaza, Suite 265 Los Angeles, California 90095 Santa Monica - Pediatrics, Primary & Specialty Care 1260 15th Street Suite 1024 Santa Monica, California 90404 | Los Angeles: (310) 825-6196 Santa Monica: (310) 825-0867 |
| California | Brent L. Fogel, MD, PhD | Neurology, Neurodevelopmental Disabilities | Neurological Services 300 UCLA Medical Plaza Suite B200 Los Angeles, California 90095 | (310) 794-1195 |
| California | Dr. Yvette Bordelon | Neurology | Neurological Services 300 UCLA Medical Plaza Suite B200 Los Angeles, California 90095 | (310) 794-1195 |
| California | Maura R.Z. Ruzhnikov, MD | Neurology - Child Neurology, Neurogenetics, Medical Genetics | Stanford University Medical Center Child Neurology 730 Welch Rd., 2nd Fl Palo Alto, CA 94304 | (650) 723-0993 |
| Colorado | Johan Van Hove, MD, PhD | Medical Genetics and Genomics | Children's Hospital Colorado Anschutz Medical Campus 13123 East 16th Ave Aurora, CO 80045 | (720) 777-1234 |
| Connecticut | Jeffery Kocsis, PhD | Neurology | Yale School of Medicine 333 Cedar Street New Haven, CT 06510 | (203) 937-3802 |
| Delaware | Know of a provider in Delaware? Fill out the form on the right! | |||
| Florida | Gustavo Maegawa, M.D., Ph.D. | Clinical Genetics and Genomics, Biochemical Genetics, Pediatrics | University of Florida 1600 SW Archer Road Gainesville, FL 32610 | (352) 273-9731 |
| Georgia | Stephanie R Keller, MD | Pediatric Neurology | Center for Advanced Pediatrics, 1400 Tullie Road NE 4th Floor Atlanta, GA 30329 Childrens Physician Group - Neurology 410 Peachtree Pkwy, Suite 300 Cumming, GA 30041 | Atlanta & Cumming: (404) 785-5437 |
| Hawaii | Know of a provider in Hawaii? Fill out the form on the right! | |||
| Idaho | Know of a provider in Idaho? Fill out the form on the right! | |||
| Illinois | Jennifer P. Rubin, MD | Neurology | Children's Hospital of Chicago Outpatient Center in Northbrook 1131 Techny Road Northbrook, Illinois 60062 Outpatient Center in Lincoln Park 2515 N. Clark Street/467 W. Deming Place Chicago, Illinois 60614-3393 | Northbrook: (312) 227-7600 Chicago: (800) 543-7362 |
| Illinois | Barbara K. Burton, MD | PKU and other metabolic disorders, lysosomal storage disorders, neurogenetic disorders, connective tissue disorders, MPS disorders, Morquio syndrome | Ann & Robert H. Lurie Children's Hospital of Chicago 225 E. Chicago Ave. Chicago, Illinois 60611 | (800) 543-7362 |
| Indiana | Know of a provider in Indiana? Fill out the form on the right! | |||
| Iowa | Know of a provider in Iowa? Fill out the form on the right! | |||
| Kansas | Know of a provider in Kansas? Fill out the form on the right! | |||
| Kentucky | Know of a provider in Kentucky? Fill out the form on the right! | |||
| Louisiana | Know of a provider in Louisiana? Fill out the form on the right! | |||
| Maine | Know of a provider in Maine? Fill out the form on the right! | |||
| Maryland | S. Ali Fatemi , MD | Neurology | Kennedy Krieger Institute 707 N. Broadway, 500V Baltimore, MD 21205 | (443) 923-2750 |
| Maryland | Ann Moser, PhD | Co-Director, Peroxisomal Diseases Laboratory | Kennedy Krieger Institute 707 N. Broadway Baltimore, MD 21205 | (443) 923-2761 |
| Maryland | Richard O. Jones , PhD | Administrative Laboratory Manager, Genetics Laboratories | Kennedy Krieger Institute 707 N. Broadway Baltimore, MD 21205 | (443) 923-2758 |
| Maryland | Gerald Vincent Raymond, M.D. | Medical Genetics | Johns Hopkins Pediatrics 200 N. Wolfe Street Rubenstein Child Health Building Baltimore, MD 21287 | (410) 955-3071 |
| Maryland | SakkuBai Naidu , MD | Research Scientist | Kennedy Krieger Institute 707 N. Broadway Baltimore, MD 21205 | (443) 923-2778 |
| Massachusetts | Alessandra Biffi, MD | Gene therapy, Hematopoietic stem cell transplantation, Lysosomal disorders, Metabolic disorders | Dana-Farber Cancer Institute 450 Brookline Avenue Boston, MA 02215 | (617) 632-2204 |
| Massachusetts | Florian Eichler, MD | Neurogenetics, Developmental delays, White matter disease, Leukodystrophies, Hereditary peripheral neuropathies, Neurology, Pediatric Neurology | Neuromuscular Diagnostic Center 165 Cambridge Street Suite 820 Boston, MA 02114 | (617) 724-6510 |
| Massachusetts | Christine N. Duncan, MD | Pediatric Hematology/Oncology | Dana-Farber Cancer Institute 450 Brookline Avenue Boston, MA 02215 | (617) 632-4882 |
| Michigan | Know of a provider in Michigan? Fill out the form on the right! | |||
| Minnesota | Deborah L. Renaud, M.D. | Medical Geneticist, Pediatrician, Neurologist | Mayo Clinic 200 1st St SW Rochester, MN 55905 | (507) 284-3372 |
| Minnesota | Weston Miller, MD | Pediatric Blood and Marrow Transplant Physician | Pediatric BMT D590 Mayo 420 Delaware St SE Minneapolis, MN 55455 | (612) 626-2961 |
| Minnesota | Paul Orchard, MD | Pediatric Blood and Marrow Transplant Physician | Pediatric BMT 660B MCRB 420 Delaware St SE Minneapolis, MN 55455 | (612) 626-2961 |
| Minnesota | Marc C. Patterson, M.D. | Neurology | Mayo Clinic 200 1st St SW Rochester, MN 55905 | (480) 301-8000 |
| Minnesota | Troy Lund, MD, PHD | Pediatric Blood and Marrow Transplant Physician | Pediatric BMT 460G Masonic Cancer Research Building 425 East River Parkway Minneapolis, MN 55455 | (612) 626-2961 |
| Minnesota | Hyoung Choi, MD | Pediatrics Neurology w/ Special Qualification in Child Neurology | University of Minnesota Physicians 720 Washington Ave SE, #200 Minneapolis, MN 55414 | (612) 884-0600 |
| Mississippi | Know of a provider in Michigan? Fill out the form on the right! | |||
| Missouri | Mark S. Sands, PhD | Lysosomal storage diseases, Neurodegenerative disorders, Gene therapy, Enzyme replacement, Hematopoiesis, Bone marrow transplantation | Division of Oncology Section of Stem Cell Biology Washington University Medical School 660 South Euclid Avenue - Box 8007 St. Louis, MO 63110 | (314) 362-5494 |
| Montana | Know of a provider in Montana? Fill out the form on the right! | |||
| Nebraska | William B Rizzo, MD | Clinical Biochemical Genetics, Clinical Genetics, Pediatrics | Children's Hospital & Medical Center Specialty Pediatric Center 111 N. 84th St. Omaha, NE 68114 | (402) 955-4199 |
| Nevada | Know of a provider in Nevada? Fill out the form on the right! | |||
| New Hampshire | Know of a provider in New Hampshire? Fill out the form on the right! | |||
| New Jersey | Know of a provider in New Jersey? Fill out the form on the right! | |||
| New Mexico | Know of a provider in New Mexico? Fill out the form on the right! | |||
| New York | Susan N. Manganaro, MD | Neurology | HealthConnect® 101 Nicolls Road Stony Brook NY 11794 | (631) 444-4000 |
| New York | Cairo, Mitchell, MD | Pediatrics & Pediatric Hematology-Oncology | Maria Fareri Children's Hospital100 Woods Road Valhalla, NY, 10595 BCHP Bradhurst Avenue Specialty Offices 19 Bradhurst Avenue, Suites 800S & 2200N Hawthorne, NY 10532 | Valhalla: (914) 493-7997 Hawthorne: (914) 493-7997 |
| New York | Eric J. Mallack, MD | Child Neurology | Weill Cornell Medicine Child Neurology 505 East 70th Street, Helmsley Tower, 3rd Floor New York, NY 10021 | (212) 746-3278 |
| New York | Heather A. Lau, MD | Neuro-Genetics | NYU Neurogenetics 222 East 41st Street New York, NY 10017 | (212) 263-7744 |
| New York | Robert Thompson Stone, MD | Child Neurology | University of Rochester Medical Faculty Group 200 E River Rd. Rochester, NY 14623, USA Golisano Children's Hospital 601 Elmwood Ave. Rochester, NY 14642, USA | (585) 275-2808 |
| North Carolina | Joanne Kurtzberg, MD | Pediatric Bone Marrow Transplant Specialist | Duke Children's Hospital & Health Center 2301 Erwin Road Durham, NC 27710 | (919) 241-8090 |
| North Dakota | Know of a provider in North Dakota? Fill out the form on the right! | |||
| Ohio | Sumit Parikh, MD | Neurogenetics, Metabolic & Mitochondrial Disease | Cleveland Clinic Main Campus Mail Code S60 9500 Euclid Avenue Cleveland, OH 44195 | (216) 444-5559 |
| Ohio | Gary Hsich, MD | Pseudotumor cerebri, leukodystrophies, lysosomal storage disorders, Pediatric Neurology Child abuse, Factitious disorders | Cleveland Clinic Main Campus Mail Code S60 9500 Euclid Avenue Cleveland, OH 44195 | (216) 636-5860 |
| Oklahoma | Know of a provider in North Dakota? Fill out the form on the right! | |||
| Oregon | David M. Koeller | Inherited (Genetic) Disorders of Metabolism | OHSU Child Development and Rehabilitation Center, Marquam Hill 707 S.W. Gaines Street Portland, Oregon 97239 | (877) 346-0640 |
| Pennsylvania | Paul Szabolcs, MD | Pediatrics | Division of Blood and Marrow Transplantation/ Cellular Therapies UPMC Children's Hospital of Pittsburgh 4401 Penn Ave., Suite 9B Pittsburgh, PA 15224 United States | (412) 692-6740 |
| Pennsylvania | Laura Adang, MD, PhD | Neuro-inflammatory Disorders | Buerger Center for Advanced Pediatric Care 3500 Civic Center Blvd., Philadelphia, PA 19104 Main Campus 3401 Civic Center Blvd., Philadelphia, PA 19104-4399 | (215) 590-1000 |
| Pennsylvania | Adeline Vanderver, MD | Leukodystrophy | Buerger Center for Advanced Pediatric Care 3500 Civic Center Blvd., Philadelphia, PA 19104 Main Campus 3401 Civic Center Blvd., Philadelphia, PA 19104-4399 | (215) 590-1000 |
| Pennsylvania | Amy Waldman, MD | Leukodystrophy | Buerger Center for Advanced Pediatric Care 3500 Civic Center Blvd., Philadelphia, PA 19104 Main Campus 3401 Civic Center Blvd., Philadelphia, PA 19104-4399 | (215) 590-1000 |
| Pennsylvania | Maria Escolar, MD, MS | Neurology Neurology (pediatric) | Neurodevelopment in Rare Disorders UPMC Children's Hospital of Pittsburgh 4401 Penn Ave. Plaza Building, Floor 4 Pittsburgh, PA 15224 United States | (412) 692-9955 |
| Rhode Island | Know of a provider in Rhode Island? Fill out the form on the right! | |||
| South Carolina | Know of a provider in South Carolina? Fill out the form on the right! | |||
| South Dakota | Know of a provider in South Dakota? Fill out the form on the right! | |||
| Tennessee | Kevin C. Ess, MD, PhD | Neurology, Pediatric | Division of Neurology 2200 Children's Way, 9th Floor, Doctors' Office To Nashville, TN 37232 | (615) 936-5536 |
| Texas | Joseph Ray, MD | Genetics | UTMB Health Pediatric Genetics - Bay Colony 2785 Gulf Freeway South Suite 2.200 League City, TX 77573 UTMB Health Pediatric Genetics - Island East, Galveston 400 Harborside Drive Suite 103 Galveston, TX 77555 | (409) 772-3466 |
| Texas | Raphael Schiffmann, MD, MHSc, FAAN | Neurology | Baylor Scott & White Neurometabolic & Undiagnosed Neurological Diseases 3417 Gaston Ave, Ste 935 Dallas, TX 75246 | (214) 820-4655 |
| Texas | Lisa T. Emrick, MD | Neurology | Texas Children's Hospital 6701 Fannin Street Suite 1250 Houston, TX 77030 United States | (832) 822-1750 |
| Utah | Joshua Leitch Bonkowsky, MD, PHD | Pediatric Neurology | Eccles Primary Children’s Outpatient Services Building 81 N Mario Capecchi Drive Salt Lake City, UT 84113 | (801) 213-3599 |
| Vermont | Know of a provider in Vermont? Fill out the form on the right! | |||
| Virginia | Know of a provider in Virginia? Fill out the form on the right! | |||
| Washington | Know of a provider in Washington? Fill out the form on the right! | |||
| Washington, D.C. | Amy M. Pizzino, MS, CGC | Genetic Counselor | Children's National 111 Michigan Avenue, NW Washington, District of Columbia 20010 | (888) 884-2327 |
| Washington, D.C. | Laura Ball, PhD | Hearing and Speech Specialist | Children's National 111 Michigan Avenue, NW Washington, District of Columbia 20010 | (888) 884-2327 |
| West Virginia | Know of a provider in West Virginia? Fill out the form on the right! | |||
| Wisconsin | Charles Peters, MD | Pediatric & Adolescent Medicine | Mayo Clinic 191 Theater Road Onalaska, WI 54650 | (608) 392-5000 |
| Wisconsin | Ian D. Duncan, BMVS, PHD | Inherited and acquired disorders of CNS myelin | UW–Madison Stem Cell and Regenerative Medicine Center 8457 WIMR II 1111 Highland Avenue Madison, WI 53705 | (608) 263-9828 |
| Wyoming | Know of a provider in Wyoming? Fill out the form on the right! |