SMS Clinics are designed to serve SMS patients with excellence and compassion to ensure well-being and proper health.
The Smith-Magenis Syndrome Clinics are multi-specialty clinics that offer comprehensive care for patients with SMS.
Smith-Magenis Syndrome Clinics offer persons with SMS and their families an opportunity to receive targeted medical and clinical care and supervision to address the specific challenges, including health concerns, associated with SMS. The clinics will provide a comprehensive approach to care for patients with SMS, in which a multidisciplinary team of SMS experts will assess, consult and collaborate on a cohesive plan of care for each patient.
The PRISMS SMS Clinic Travel Fund Reimbursement Program supports families who need to travel to one of the SMS Clinics. This fund will help defray costs for travel, (airline or mileage support), lodging costs or other miscellaneous costs attributed to traveling to an SMS Clinic. This reimbursement is available to a family only one time. Please contact Casey Gorman at email@example.com to request information and an application. Please notate “SMS Clinic Travel Fund Reimbursement” in the subject line of your email.
- Patient engagement and appropriate consultations and care for persons with SMS
- Ensure that all clinics share the same level of standards and practices
- Routine communication amongst clinics to ensure accountability, share pertinent information, discuss case presentations, and share updates on care and clinic status
- SMS experts are available at each clinic, with referral options for care at other locations
- Patients may be able to return for regular visits, (based upon clinic/personnel availability)
- Clinics may reserve a percentage of time towards research of SMS and may recruit patients for research from clinic participation
- SMS Patient Registry
- Patients may expect possible treatments for:
- Medical concerns, (medication prescriptions, referrals for diagnostic tests, and/or medical specialists)
- Behavioral consultations
- Educational/vocational guidance
- Speech-Language Assessment
- Therapeutic assessments, including but not limited to: Speech and Language, Physical therapy, and Occupational therapy
- Transition Medicine
- Connection to other SMS families while at the clinic
Active SMS Clinics
Texas Children’s Hospital- Houston, TX
Mark Wallace Tower, 6701 Fannin Street, Houston, TX 77030
The Smith-Magenis Syndrome clinic at Texas Children’s Hospital in Houston, Texas is a clinic that will give complete care for adults and children with SMS every 3 months. The team includes:
- Lorraine Potocki, MD, FACMG, Clinical Geneticist
- Rachel Franciskovich, MS, CGC, Genetic Counselor and Clinic Coordinator
- Kevin Kaplan, MD, Sleep Medicine Pulmonologist
- Adiaha Spinks-Franklin, MD, MPH, FAAP, Developmental-Behavioral Pediatrics
- Sarah Elsea, Ph.D., FACMG, Lead SMS Research Investigator
- Theresa Wilson, MS, RD, Research Coordinator
For more information, please reach out to the clinic directly at firstname.lastname@example.org.
Rady Children’s Hospital – San Diego, CA
Gail Reiner, DNP, FNP-C
Rady Children’s Hospital offers dedicated Smith-Magenis Syndrome clinics in the Department of Pediatric Neurology, 8001 Frost St., San Diego, CA. The clinics are held quarterly, on Tuesday mornings.
Contact Marlene Uriarte at 858-966-5819 to make an appointment request for Gail Reiner, nurse practitioner.
Geisinger ADMI – Lewisburg, PA
Geisinger Health System – Autism and Developmental Medicine Institute
Brenda Finucane, MS, LGC, Clinic Director; Thomas D. Challman, MD, ADMI Medical Director; Christa L. Martin, PhD, ADMI Director
At Geisinger’s Autism & Developmental Medicine Institute (ADMI), families can access a variety of medical, behavioral, genetic counseling, and assessment services. In addition, ADMI’s team of specialists is available to provide local and long distance consultations to help schools, agencies and families address the complex needs of children and adults with SMS.
To learn more about Geisinger’s full range of services for people affected by SMS call 570-522-6287 or email email@example.com.
Children’s National Medical Center – Washington DC
The Neurogenetics Program at Children’s National Medical Center is part of our Division of Neurology – a national leader in neurological care for kids. Our program focuses on those whose neurological conditions involve unique inherited or genetic traits. Working across medical disciplines, the Neurogenetics team at Children’s National provides comprehensive care for a wide array of neurogenetic disorders including Smith-Magenis Syndrome.
The Neurogenetics team at Children’s National includes these and many other specialists:
- Neurodevelopmental specialists
- Genetic counselors
- Geneticists specializing in metabolic and biochemical conditions
- Nurse practitioners
- Pediatric neurologists with specialization in genetics
- Clinical social workers
- Speech pathologists
Contact number | 202-476-2120
Meira Meltzer, firstname.lastname@example.org