DOCTORS WHO ARE EXPERTS
IN SPINAL MUSCULAR ATROPHY
Dr. Swoboda, Dr. Scroth, and Dr.Bach form the trio of doctors with more experience in the area of SMA worldwide. All of them are very accessible. If you are a newly diagnosed case, try to seek their advise before making any decision. They deal with SMA all the time.
CENTER FOR NON-INVASIVE MECHANICAL VENTILATION
UNIVERSITY OF MEDICINE AND DENTISTRY
OF NEW JERSEY (UMDNJ), UNIVERSITY HOSPITAL
Dr. John Bach, Jr.
Physician
Information:
(973) 972-2850
Dr.Bach has successfully used machines for non-invasive ventilation in infants and children with SMA for over 20 years. His office is located in the University Hospital of UMDNJ, Newark, New Jersey. When a child is in hospital pediatric intensive care (and has SMA), he is the main doctor that is consulted on SMA issues. He has patients from all over the world.
Dr.Bach runs the Center for Noninvasive Mechanical Ventilation, and is affiliated with MDA. One patient developed a website about him: www.doctorbach.com. Deirdre sees Dr.Bach every six months or when necessary.
SMA RESEARCH CENTER
Dr. Kathryn J. Swoboda
Neurologist
Information:
(801) 585-9717
The Department. of Neurology at the University of Utah provides comprehensive information on SMA. This link goes specifically to a video they have on the respiratory care of patients with SMA, and how crucial it is to use the "Cough Assist". We encourage you to see the video, and read all the information that is available for the AME. Basically, it provides important information on AME, and the project CURESMA in which Dr. Swoboda is very involved. Dr.Swoboda is very active in the cause to cure SMA.
CLINIC FOR PEDIATRIC NEUROLOGICAL DISORDERS
Dra. Mary Schroth
Pulmonologist
Information:
(608) 263-6420
Recent clinical studies have been conducted at the Pediatric Hospital of the University of Wisconsin. Dr. Mary Schroth has been noted for her efforts on behalf of many children with SMA. She is very active in the cause of finding a cure for SMA.
MDA-SMA CLINIC
Information: (212) 304-5202
Only for SMA patients, this MDA clinic specializes in treatment and research into SMA. The clinic provides neurologist, pulmonologist, pediatrician, physiatrist, a geneticist, consultations on SMA and family support. It is a place where you get all the services and information on clinical trials for SMA patients.
EVERYTHING ABOUT SPINAL MUSCULAR ATROPHY
IMPORTANT BASIC DOCUMENTS THAT EVERYONE MUST HAVE
SMA Consensus of Standards of Care 2007
LET'S DESTROY THIS MONSTER!
DAILY CARE MANUAL FOR DEIRDRE MEDINA
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