Connect with an ALSP Clinical Expert
Once your neurologist suspects or confirms your diagnosis as ALSP caused by a mutation on the CSF1R gene, it’s important to get connected to the right experts. Due to the complexity of this rare disease, it’s likely your care team has never encountered another patient with this condition. It’s imperative that you or your family member receive the most innovative options for treatment and management of the disease.
The following clinical experts have been identified as leaders in the care and clinical management of ALSP. These clinicians have expressed an interest in caring for or treating ALSP patients. As a rare disease organization, we are grateful for each of the listed experts whom are well known around the world for their program and can meet the extensive medical needs of patients with ALSP.
We hope this list will be helpful to you – or your loved one – as you seek out qualified, quality, and experienced care.
Please Note: The publication of this list by the Sisters' Hope Foundation is not intended as, nor does the publication constitute, the recommendation, approval or endorsement, by the Foundation of any of the clinicians whose names appear on the list.
Are you a healthcare provider working with ALSP patients? To be added to this directory, email info@sistershopefoundation.org.
Florida:
Mayo Clinic at Jacksonville
4500 San Pablo Rd, Jacksonville, FL 32224
Zbigniew K. Wszolek, M.D.
Consultant, Department of Neurology
Haworth Family Professor in Neurodegenerative Diseases
Professor of Neurology
Phone: 904-953-7229
FAX: 904-953-0757
Pager: 904-953-8173
E-mail: Wszolek.Zbigniew@mayo.edu
Beth K. Rush, Ph.D., ABPP
Board Certified in Clinical Neuropsychology and Rehabilitation Psychology, Consultant, Department of Psychiatry & Psychology
Assistant Professor, College of Medicine
Phone: 904-953-6600
Fax: 904-953-0461
Email: rush.beth@mayo.edu
Klaas J. Wierenga, M.D., DACMG
Consultant, Professor of Clinical Genomics
Department of Clinical Genomics
Phone: 904-953-6213
Fax: 904-953-6056
Erik H. Middlebrooks, M.D.
Consultant, Neuroradiology and Neurosurgery
Professor & Program Director, Neuroradiology
Mayo Clinic College of Medicine and Science
Assistant: 904-953-6696
Pager: 904-953-3706
Email: middlebrooks.erik@mayo.edu
Ernesto Ayala, M.D.
Hematology/Oncology, Bone Marrow Transplant and Cellular Therapies
Minnesota:
University of Minnesota
Troy Lund, MSMS, Ph.D., M.D., FAAP
Associate Professor & Associate Director Metabolic Program
University of Minnesota, A NORD Rare Disease Center of Excellence
- Division of Pediatric Blood and Marrow Transplantation & Cellular Therapy
- Leukodystrophy Center of Excellence
- Stem Cell Institute
- Global Pediatrics
U.S. Mail:
MMC 366, 420 Delaware St SE
Minneapolis, MN 55455
Offices:
425 East River Parkway
Minneapolis, MN 55455
Hospital Operator: 612-273-3000 beeper# 1451
Phone: 612-625-4185
Fax: 612-624-3913
Email: lundx072@umn.edu
Pennsylvania:
Hospital of the University of Pennsylvania
3400 Spruce Street, Philadelphia, PA 19104
Perelman School of Medicine at the University of Pennsylvania
3400 Civic Center Blvd., 2nd Floor, Philadelphia, PA 19104
Jennifer L. Orthmann-Murphy, M.D., Ph.D.
Assistant Professor of Neurology
Co-Director of the Age-Span Fellowship on MS/Neuroinflammatory Disorders
Perelman School of Medicine
Phone: 215-662-3606
Penn Medicine, University of Pennsylvania Health System, Department of Neurogenetics
PAH: 330 S 9th St, Philadelphia, PA 19107
Appointments: 215-662-3606, request “Neurogenetics”
Fax: 215-829-6606 / 215-829-3935, “Attn: Neurogenetics”
Massachusetts:
Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
Florian Eichler, M.D.
Director, Center for Rare Neurological Diseases
Mass General Adult & Pediatric Neurology
Harvard Medical School
Phone: 617-724-6400 or 855-644-6387
Roberta La Piana, MD, PhD (she/her)
- Assistant Professor, Department of Neurology & Neurosurgery
- Associate Member, Department of Diagnostic Radiology
- Professeur Adjoint, Département de Neurologie et Neurochirurgie
- Membre Associé, Départment de Radiologie
The Neuro
Montreal Neurological Institute-Hospital
3801 University Street, Montreal, Quebec H3A 2B4
Phone: 514-398-3334
theneuro.ca
Elizabeth Finger, M.D.
Associate Professor, Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, University of Western Ontario
Parkwood Institute, St. Joseph’s Health Care
London, Ontario, Canada
Clinic telephone: 519 646-6032
Fax: 519 646-6226
Dr. Caroline Bergner
- Leukodystrophy outpatient clinic
- Clinic of Neurology
University hospital Leipzig
Liebigstr. 20a, Haus 6, 04103 Leipzig
Telefone: +49 341 97 20986 (MZEB; Leukodystrophie-Sprechstunde)
E-Mail: Caroline.Bergner@medizin.uni-leipzig.de
