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Tuesday, January 23, 2018

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Families of Spinal Muscular Atrophy Unite
Press Release

May, 2009

LIBERTYVILLE, Ill., May 19 /PRNewswire-USNewswire/ - Families of Spinal Muscular Atrophy has just launched a new Medical Advisory Council (MAC). The Families of SMA MAC is one of the most highly respected bodies of SMA medical and clinical experts in the U.S., setting the agenda for proactive, creative, and collaborative leadership on issues that improve the quality of medical care for those affected by SMA.

The new Council will focus on educating families, health care providers, and the public about SMA; expanding SMA standards of care; and translating positive research results into clinical practice. Dr. Mary Schroth, a leading pediatric pulmonologist will serve as Chair for the new Council. Mary is Associate Professor of Pediatrics and Director of the Pediatric Pulmonary Center Grant at the University of Wisconsin Children's Hospital.

The MAC is composed of experts in the following fields:

Neurology (pediatric and adult); Pediatrics; Pulmonology; Pediatric Orthopedic Surgery; Pediatric Critical Care (NICU specialist); Physiatry (rehab medicine); Psychology; Genetic Counseling and/or Medical Ethics; Physical Therapy; Occupational Therapy; Diet and Nutrition; Respiratory Therapy; Nursing.

The members of the new MAC will be present at the upcoming 25th Anniversary Conference to be held in Cincinnati, OH in June.

Members of the new MAC include:

    -Susan Apkon, MD.  The Children's Hospital, Colorado.
-Thomas Crawford, MD. Johns Hopkins University.
-Richard S. Finkel, MD. The Children's Hospital of Philadelphia
-Albert Freedman, Ph.D. West Chester, PA.
-Robert Graham, MD. Children's Hospital Boston.
-John Grayhack, MD. Northwestern University Feinberg School of Medicine.
Children's Memorial Hospital.
-John T. Kissel, MD. The Ohio State University.
-Richard M. Kravitz, MD. Duke University Medical Center.
-Kristin J. Krosschell, PT, MA, PCS. Feinberg School of Medicine,
Northwestern University.
-Garey Noritz, MD. MetroHealth Medical Center/Case Western Reserve
-Karen Patterson, MS, PT, PCS. University of Wisconsin Physical Therapy
-Richard Shell, MD. Nationwide Children's Hospital and The Ohio State
-Kenneth Silver, MD. University of Chicago Comer Children's Hospital.
-Brian Snyder, MD, Ph.D. Harvard Medical School and Children's Hospital
of Boston.
-Jodi Wolff, MS, RD. MetroHealth Medical Center/Case Western Reserve.
-Andreas Constantinescu, MD, Ph.D. Columbia University/Children's
Hospital of NY-Presbyterian.
-Susan Iannaccone, MD. University of Texas Southwestern Medical Center.
Children's Medical Center
-Jonathan Finder, MD. University of Pittsburgh School of Medicine and
Children's Hospital of Pittsburgh.
-Petra Kaufmann, MD. Columbia University.
-Anastassios C. Koumbourlis, MD, MPH. Schneider Children's Hospital.
Albert Einstein College of Medicine.
-Jo Anne Maczulski, MA, OTR/L. Chicago, IL.
-Barry S. Russman, MD. The Ohio State University and Shriners Hospital
for Children.
-Kathryn J. Swoboda, MD. University of Utah School of Medicine.
-Nanci Yuan, MD. Stanford University.

About Families of SMA:

Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure by:

Funding and advancing a comprehensive research program; Supporting SMA families through networking, information and services; Improving care for all SMA patients; Educating health professionals and the public about SMA; Enlisting government support for SMA; Embracing all touched by SMA in a caring community.

Our vision is a world where Spinal Muscular Atrophy is treatable and curable.

The goal of the organization for 2009 is to have raised $50 million for SMA research. Families of SMA funds and directs the leading SMA research programs. Families of SMA has created hope for our community that did not exist in 1984. Our support comes from generous individual donations and numerous fundraising events held by volunteer families and our chapters.

Our successful results and progress from basic research to drug discovery programs to clinical trials provides real hope for families and patients:

    -Families of SMA has funded 5 multi-center clinical trials for existing
drugs that have potential for SMA.
-FSMA has directed and funded the leading new drug development program for
a therapy specially designed to treat SMA.
-Families of SMA is building a pipeline of drug discovery programs based
on our investments in basic research.
-FSMA has invested significant resources into alternative approaches that
show promise to cure SMA.


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