FightSMA Spinal Muscular Atrophy Conference 2011
FightSMA Annual Conference 2011: The Good Fight
Many Experts. One Day. One Dream. Join Us.
FightSMA is pleased to invite you, our treasured friends in the SMA community,
to join us on Thursday, May 5th, 2011 for a monumental, first-ever event.
Reservations are now closed for accommodations at the L’Enfant Plaza Hotel, where FightSMA’s Annual Conference 2011 is taking place. However, we invite you to still attend the meeting as our guest! Please e-mail Caroline Gibson to register for the Families Dinner on May 4th from 6:00-8:00PM, or for the Thriving with SMA Panel on May 5th from 9:00AM to 2:00 PM.
The L’Enfant Plaza Hotel is easily accessible from the Metro. For a list of hotels in the surrounding areas, please visit: http://reservations.washington.org. Here are some nearby hotels for your convenience:
.2 miles from L’Enfant
L’Enfant Metro Station
.3 miles from L’Enfant
L’Enfant Metro Station
.5 miles from L’Enfant
.1 miles from Federal Center SW Station
.9 miles from L’Enfant
.3 miles to Metro Center Station
.9 miles from L’Enfant
.1 miles from Gallery Pl-Chinatown Metro about $389 per night
1.3 miles from L’Enfant
.2 miles from Farragut West Metro
You MUST register with Caroline Gibson in order to attend any or all parts of the meeting. The cut-off for Conference registration is Wednesday, April 20th.
Thriving with SMA: LIVE!
Join us in Washington or from your desk
Realizing the Dream for 20 Years and going strong
Thursday, May 5, 2011
L’Enfant Plaza Hotel (Washington, DC) and broadcast live, worldwide!
9:00am EST – 2:00 PM EST
In this historic and significant series of panels, experts on orthopedics, pulmonary issues, nutrition and clinical trials will come together to share the latest updates in their field, answer questions from the audience (live and web participants), and once again unite the SMA community through knowledge and empowerment.
Each panel will consist of three to six elite specialists and experts, who are flying in from some of the most prestigious universities and institutions in the world. Please click here to view the panelist bios!
We invite you to join us for this exciting panel presentation. There is limited seating, so be sure to secure your reservation TODAY! We encourage commuters from the Northern Virginia/Maryland area to join us for the day, as well!
If you are unable to join us in person, FightSMA is pleased to announce that we will be live broadcasting the entire panel via webcast—for free! You and your family will be able to tune in, whether you’re in Los Angeles or London, New York or New Dehli. Tune in for the entire panel or drop in as you please.
We’re accepting questions for the panelists starting today, so send in your questions by clicking here.
Schedule of Events
For families joining us in Washington, below is the schedule of events for the Families & Friends Conference:
Wednesday, May 4th, 2011
4:00 PM – Families and Friends Registration
6:00 PM – Families and Friends Dinner, with researchers and physicians for Q&A
Thursday, May 5th, 2011
8:00 AM – Breakfast
9:00 AM – Webinar I (Pulmonary/Respiratory Issues)
10:15 AM – Webinar II (Orthopedics)
11:30 AM – Webinar III (Nutrition)
12:00 PM – Complimentary Buffet Lunch
12:45 PM – Webinar IV (Clinical Trial)
2:00 PM – Wrap-Up of entire conference by Drs. Christian Lorson (University of Missouri- Columbia) and Alex Mackenzie (Children’s Hospital of Eastern Ontario)
Visiting Capitol Hill
FightSMA’s government affairs team is currently in conversation with top leadership staff regarding the future of federal legislation supporting SMA research — particularly in the area of clinical trials — as well as broader NIH funding concerns as Congress debates the budget for 2011-2012. It is important that we maintain a strong presence on Capitol Hill. If you’re interested in FightSMA scheduling a visit to your Congressman or Senators’ offices, please contact Caroline Gibson (firstname.lastname@example.org or 804.515.0080)
Please contact the FightSMA National Headquarters office at 804-515-0080.
2011 Researchers Conference
Dates: May 3-4, 2011
Location: L’Enfant Plaza Hotel, Washington, DC
Overview: Select researchers and scientists meet in an intimate setting to discuss the most recent research and clinical trials through presentations and open dialogue.
Schedule of Events
CHECK BACK SOON FOR MORE DETAILS
2011 Best Practices Meeting
Dates: May 4, 2011
Location: L’Enfant Plaza Hotel, Washington, DC
Overview: Select specialists and scientists meet in an intimate setting to discuss best practices.
2011 Families and Friends Conference
Dates: May 4-6, 2011
Location: L’Enfant Plaza Hotel, Washington, DC
Overview: Conference components include lay-friendly science briefing with Q&A, “Thriving with SMA” panel discussion, one-on-one consultations with panelists, and visits to Capitol Hill.
Thriving with SMA Panel
The Thriving with SMA Panel has been a successful component of the FightSMA Annual Conference since 2005. It is a comprehensive, interactive presentation by some of the most elite specialists, researchers and physicians in the world, addressing issues related to the care and the daily life of SMA patients, including respiratory issues, clinical trial, orthopedics, nutrition, and more.
This year, the Thriving with SMA Panel will be available not only to the families and friends attending the 2011 FightSMA Annual Conference in Washington, but will also be available through an unrestricted, free webinar.
Thriving with SMA Schedule
9:00 AM – Webinar I: Pulmonary/Respiratory
10:15 – Webinar II: Orthopedics
Dr. John Smith (University of Utah), Dr. Craig Eberson (University Orthopedics Rhode Island), Dr. Brian Snyder (Harvard University), Dr. John Grayhack (Children’s Memorial)
11:30 – Webinar III: Nutrition
Rebecca Hurst (University of Utah), Erin Seffrood (University of Wisconsin), Barbara Godshall (Cincinnati Children’s Hospital Medical Center), Dr. Thomas Crawford (Johns Hopkins)
12:45 – Webinar IV: Clinical Trial / Neurology
Dr. Kathryn Swoboda (University of Utah), Dr. Sandy Reyna (University of Utah), Dr. Carolina Tesi-Rocha (Children’s National), Dr. Bob Leshner, Dr. Ching Wang (Stanford University), Dr. Alex MacKenzie (Children’s Hospital of Eastern Ontario), Dr. Thomas Crawford (Johns Hopkins)
2:00 – Conference Wrap-Up from Drs. Christian Lorson and Alex Mackenzie
Craig P. Eberson, M.D. – Pediatric Orthopedist, Hasbro Children’s Hospital
Dr. Eberson is the Chief of Pediatric Orthopaedics at Hasbro Children’s Hospital/Warren Alpert Medical School of Brown University in Providence, Rhode Island. His clinical responsibilities include directing the Pediatric Spine Service at Hasbro Children’s Hospital, as well as serving as the Orthopedic Director of the Muscle Disorder Clinic, which cares for children from throughout Southern New England with neuromuscular disorders. Dr. Eberson is the author of numerous book chapters, scientific articles, and national presentations related to the orthopedic care of children and in 2000, he was the recipient of the Haffenreffer Award for Excellence in Orthopaedic Research. His clinical interests include the treatment of scoliosis and the treatment of spinal disorders via a minimally invasive approach.
Ching Wang, M.D., Ph.D. – Stanford University Medical Center
Dr. Wang is Director of the Pediatric Neuromuscular Clinic at Lucile Packard Children’s Hospital and the primary investigator for the SMA Research Group at Stanford University Medical Center. He was a driving force behind the organization of and the leading author for the publication of the recent Consensus Statement for Standard of Care in Spinal Muscular Atrophy.
Nanci Yuan, MD DABSM – Pediatric Pulmonologist and Sleep Medicine, Lucile Salter Packard Children’s Hospital at Stanford
Dr. Yuan is an is an associate professor of Pediatric Pulmonary and Sleep Medicine at Lucile Salter Packard Childrens Hospital at Stanford. She directs the Pediatric Pulmonary Sleep Laboratory at Lucile Salter Packard Children’s Hospital at Stanford in Palo Alto, California. The primary focus of her clinical and research efforts over the past decade have been directed to better identify and treat pulmonary and sleep issues in children with spinal muscular atrophy (SMA) and other motor disorders of childhood onset.
John T. Smith, M.D. – Primary Children’s Medical Center and the University of Utah
Dr. Smith is a Professor, in the Department of Orthopaedics, practicing at Primary Children’s Medical Center and the University of Utah. His current practice is focused on the treatment of spine deformities in children and adolescents. Dr. Smith received his M.D. at the University of Florida in Gainesville. He completed his residency at the University of Utah and did a fellowship in pediatric Orthopaedics and spinal deformities at Scottish Rite Hospital in Atlanta. He is the Director of the Pediatric Scoliosis Clinic. His research interests focus on pediatric spine disorders, fractures, and cost-effective care. He has been involved in the development of the Vertical Expandable Prosthetic Titanium Rib (VEPTR) and its use in children with neuromuscular scoliosis.
Dr. Richard Kravitz, M.D. – Duke University Medical Center
Dr. Kravitz is Associate Professor of Pediatric Pulmonary and Sleep Medicine at Duke University and Medical Director of the Pediatric Sleep Lab. His clinical interests are in respiratory dystrophies, pediatric sleep disorders, asthma, and complicated pneumonias. In addition to his medical education activities and clinical research pursuits, Dr. Kravitz has been a frequent contributor to peer reviewed journals and written pulmonary chapters for general pediatric textbooks. In particular, he has helped co-author several position papers on the management of the respiratory complications of patients with neuromuscular weakness, including Duchenne Muscular Dystrophy and Pompe Disease as well as spoken nationally on these topics.
Dr. Carolina Tesi Rocha - Pediatric Neurologist, Children’s National Medical Center
Dr. Tesi Rocha a pediatric neurologist and currently the director of the neuromuscular program and co-director of the MDA clinic at Children’s National Medical Center in Washington, DC. Over the past 10 yrs she has been devoted to research in the areas of Duchenne, congenital and limb girdle muscular dystrophies in Dr. Eric Hoffman’s lab. She attends the weekly pediatric neuromuscular clinic at NIH. Her wealth of knowledge, enthusiasm and compassion are evident to all patients, family and staff who come in contact with her.
Kathy Swoboda, M.D. – Pediatric Neurologist, University of Utah
Dr. Swoboda is an associate professor of Neurology and Pediatrics at the University of Utah. She directs the Pediatric Motor Disorders Research Program at the University of Utah School of Medicine in Salt Lake City, Utah. The primary focus of her research efforts over the past decade have been directed to better understand the pathophysiology and genotype-phenotype correlates underlying motor dysfunction in children with spinal muscular atrophy (SMA) and other motor disorders of childhood onset. Praised by many parents as “awesome!” and complimented on her bedside manner, Dr. Swoboda is a titan in the SMA community. She leads many SMA research studies and clinical trials, including one investigating early intervention in pre-symptomatic children. As Dr. Swoboda sees it, “if you can give them an edge, they can have a very productive life. I’m willing to take baby steps.”
Brian D. Snyder, M.D., Ph.D. – Pediatric Orthopedist, Children’s Hospital Boston
Dr. Snyder is a Board Certified Pediatric Orthopaedic surgeon on staff at Children’s Hospital, where his clinical practice focuses on spinal deformity related to congenital and neuromuscular etiologies, hip dysplasia and acquired deformities about the hip, cerebral palsy and pediatric trauma. In addition, he is an Associate Professor of Orthopaedic Surgery, Harvard Medical School and Director of the Orthopedic Biomechanics Laboratory at the Beth Israel Deaconess Medical Center. The laboratory focuses on basic and applied research in musculoskeletal biomechanics. In particular, Dr. Snyder has merged the sophisticated analytic techniques developed in the Laboratory with the innovative diagnostic and surgical techniques developed at Children’s Hospital for treating musculoskeletal diseases. Dr. Snyder has been principal investigator of NIH/NCI RO1, NIH/NIAMS R21, NASA, DOD, private foundations (Whitaker, OREF, Susan B Komen, AO/ASIF, Coulter, POSNA, SRS) and industry sponsored grants. In addition to his basic science research, Dr. Snyder has patented a unique modular spine instrumentation system to treat spinal deformity in children and adults; co-founded a company that is developing a polymer to supplement synovial fluid that minimize cartilage wear in early osteoarthritis and is developing technology for contrast enhanced, quantitative CT imaging of cartilage in synovial joints.
Rebecca Hurst Davis – MS, RD, CD-Pediatric Dietitian, University of Utah
Rebecca is a clinical dietitian at the University of Utah. Her work experience consists of work in pediatric and metabolic nutrition. As a pediatric metabolic dietitian, she worked with several different metabolic disorders including PKU and fatty acid oxidation disorders. Currently, Rebecca works with Dr. Swoboda at the University of Utah’s Pediatric Motor Disorder Research Program in Salt Lake City Utah. As part of the Pediatric Motor Disorder group, she focuses on nutrition management and research for patients with Spinal Muscular Atrophy (SMA). Rebecca’s goal is to, “provide evidence-based research and education to the healthcare community about the importance of diet in the management of SMA.”
Erin Seffrood – Pediatric Clinical Nutritionist, University of Wisconsin/American Family Children’s Hospital
Erin received her bachelor’s degree in nutritional science from Texas A&M University and her master’s degree in nutritional science from the University of Wisconsin – Stout. She is a pediatric clinical nutritionist at American Family Children’s Hospital in Madison, Wisconsin. For the past 11 years, she has worked with the Pediatric Pulmonolgy team, focusing on the nutritional management of children with spinal muscular atrophy and cystic fibrosis. She is currently working with a group of physicians, dietitians, and researchers from around the country to further understand the role diet plays in the treatment of SMA. Erin adores working with children and families and is captivated by the spirit of the SMA community.
Dr. Thomas Crawford – Associate Professor of Neurology and Pediatrics at Johns Hopkins in Baltimore, Maryland
Dr. Crawford is co-director of the MDA clinic for Neuromuscular Disorders and Neurologist for the Ataxia Telangiectasia Clinical Center at Johns Hopkins. His practice involves general child neurology with a principal interest in caring for children with neuromuscular, neuromotor, and ataxic disorders. Parents of SMA patients have said that Dr. Crawford’s “knowledge and dedication to trying to heal these children is quite evident.”
Brian Weaver, M.S., RRT-NPS, RPFT – Respiratory Therapist, University Hospital / UMDNJ, Newark, N.J.
Mr. Weaver is the Director of Respiratory Care Services at University of Medicine & Dentistry of New Jersey. He specializes in Perinatal/Pediatric respiratory care. He is published and has lectured on respiratory therapy for neuromuscular impaired patients including, Type I and Type II SMA. Mr. Weaver is always eager to educate parents around the world about options for their child’s care and act as a resource when communicating with their doctors, sharing his knowledge of respiratory problems, airway clearance techniques, equipment, and protocols, including noninvasive ventilation alternatives. His dedication to helping SMA families is evident by how highly they speak of him.
Mary Schroth, M.D. – Pediatric Pulmonologist, University of Wisconsin
Dr. Schroth is a Pediatric Pulmonologist at the University of Wisconsin Children’s Hospital and Clinics and is the Director of the Pediatric Pulmonary Center Training Grant. Building strong bonds with families around the country, she has been instrumental in the development and advancement of respiratory care for children with spinal muscular atrophy. According to Dr. Schroth, “the experience with kids with SMA Type II is that if they get good respiratory care early on, they will live a long life.” In addition to treating SMA patients, Dr. Schroth has managed clinical trials and participated in the development of the Consensus Statement for Standard of Care in Spinal Muscular Atrophy. She also developed a pediatric multidisciplinary clinic for patients with neuromuscular disease, incorporating pediatric rehabilitation medicine and pediatric orthopedic surgery.
Robert Leshner, M.D. – Rady Children’s Hospital and The University of California San Diego
Dr. Leshner was born in Brooklyn, New York. He attended Cornell University for his undergraduate and medical studies. Post graduate work in Internal Medicine and Pediatrics were taken at the University of Vermont. Fellowship training in Adult and Child Neurology was completed at the University of Colorado. Fellowship training in neuromuscular diseases and Electrodiagnostic Medicine was taken at the Medical College of Georgia. For over 30 years, his main clinical interest has been the diagnosis and treatment of Spinal Muscular Atrophy and related pediatric neuromuscular diseases. He is a senior staff neurologist at the Rady Children’s Hospital in San Diego. He holds the rank of Health Sciences Clinical Professor in the Department of Neurosciences at the University of California San Diego.
If you are interested in sponsorship opportunities during The Good Fight, please contact Caroline Gibson.