Golisano Childrens’ Hospital of Rochester

Core Team

Dr. Stone                   Give to the UR LCC

Center Director

Robert Thompson-Stone, M.D. | Pediatric Neurologist

Alexander

Center Associate Director

Alexander R. Paciorkowski, M.D. | Pediatric Neurologist

Elaine

Clinical Care Coordinator

Elaine Philipson, MS, P.N.P. | Pediatric Nurse Practitioner

Kathy Wright | Registered Nurse

Lisa Luxemberg, L.M.S.W. | Social Worker

Conditions Treated

Clinical care will be provided from initial concern, throughout childhood and until transition to adult care is completed.

The disorders the UR LCC follow include but are not limited to:

  • Alexander Disease
  • Canavan Disease
  • Metachromatic Leukodystrophy (MLD)
  • Krabbe Disease
  • X-linked Adrenoleukodystrophy (X-ALD)
  • Pelizaeus-Merzbacher Disease
  • Vanishing White Matter Disease
  • Megalencephalic leukoencephalopathy with subcortical cysts (MLC)
  • Undiagnosed leukodystrophies

Appointments

Healthcare Providers seeking an urgent referral concerning a child in their care should call the office at 585-275-2808 and request to speak with either Elaine Philipson, PNP or Dr. Robert Thompson-Stone. If for any reason they are unavailable, the referring physician should request to speak with the on-call attending. For non-urgent referrals of children to our Leukodystrophy Care Center, providers may fax referral information to our office at 585-275-3683. Please note on the referral that the concern is for a leukodystrophy or white matter disorder.

Patients and Families of children diagnosed with a leukodystrophy who would like to be followed in our Leukodystrophy Care Center can request a referral from their pediatrician and have their information faxed to our office at 585-275-3683. In addition, the patient or family may call our office at 585-275-2808 to let us know that a referral is being requested so we may follow up in a timely manner.

Location

Clinic Location
200 East River Road
Rochester, NY 14642
Phone number: 585-275-2808
Fax : 585-275-3683

Hospital Location
Golisano Children’s Hospital
University of Rochester Medical Center
601 Elmwood Avenue
Rochester, New York 14642

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