When: April 15, 2023 | 10:00AM-4:00PM EST
Where: Hilton University of Florida Hotel Conference Center, 1714 SW 34th St, Gainesville, FL 32607.
Registration for our April 15 Gainesville Family Workshop has closed.
Click here to view the Gainesville Family Workshop agenda
GUEST SPEAKERS:
Jonteriya Bedford
Outpatient Pediatric Specialties Social Worker, UF Health Shands
Jonteriya Bedford is the Outpatient Pediatric Specialties Social Worker with UF Health Shands. Jonteriya is a native to Gainesville, Florida, graduating from Eastside High School in 2012. She received her AA in Social Work from Santa Fe College in 2019, BSW from Saint Leo University 2021, and MSW from the University of Kentucky in 2022. Jonteriya has prior experience with the Alachua County School Board as well as the University of Florida. She plans in the near future to form an organization to assist underprivilege young women throughout Alachua county. She has a passion to serve, educate, and empower her community.
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Daniel R. Stewart
Clinical Dietitian, UF Health Pediatric GI
Daniel Stewart is a Nationally Registered and State licensed Dietitian. He graduated with his undergraduate degree in Food Science and Human Nutrition in 2000 from the University of Florida, completing his clinical internship with the State of Florida in 2001. He currently holds a certificate specialization in Pediatric and Adolescent Obesity. His clinical interests include Pediatric nutrition and inflammatory bowel disease, Non-alcoholic Fatty Liver Disease, Nutrition and Allergies, and Conditions resulting in growth failure.
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Dr. Angelina Bernier
Pediatric Endocrinologist, University of Florida
Dr. Angelina Bernier is a pediatric endocrinologist at the University of Florida. The daughter of a Cuban refugee, she grew up in Florida and completed her education at the University of Florida for college, medical school, residency and fellowship. Her first faculty position was at Boston University with a staff position at Joslin Diabetes Center. She worked as the Medical Director of the Barton Diabetes camp before moving back to Florida in 2015.
Dr Bernier is the Pediatric Medical Advisor for the UF Health Bariatric Surgery Center, Member of the UF Diabetes Institute and Program Director of the Pediatric Endocrine Fellowship.
Dr. Bernier Languages: English, Spanish
When: May 20, 2023 | 10:00-4:00PM CT
Where: DoubleTree by Hilton Hotel Bloomington – Minneapolis South, 7800 Normandale Blvd, Minneapolis, MN 55439.
Click here to view the Minneapolis Family Workshop agenda
Registration for the workshop and/or to reserve in the hotel room block closed on May 5, 2023.
GUEST SPEAKERS:
Meghan Burnstine, DPT
Physical Therapist, Gillette Children’s
Meghan Burnstine received her Doctorate of Physical Therapy from Northwestern University in 2012, developing a strong interest in muscular dystrophy while participating in a research study. She currently practices at Gillette Children’s and serves as the lead physical therapist in the multidisciplinary Muscular Dystrophy Clinic. Meghan is also a clinical evaluator for national and international drug research studies related to neuromuscular conditions and has a passion for improving quality of life for people with muscular dystrophy, as well as building relationships with her patients and their families.
Emily McCarthy
Occupational Therapist, Gillette Children’s
Emily McCarthy is an occupational therapist at Gillette Children’s Hospital, specializing in equipment, assistive technology, and the treatment neuromuscular conditions. She works within the multidisciplinary muscular dystrophy clinic, focusing on maximizing each patient’s independence in meaningful activities as well as completing assessments for drug approval for various neuromuscular populations. She graduated from University of Minnesota with a Bachelor of Science degree in Psychology and then the University of Wisconsin, La Cross with a Master’s in Science of Occupational Therapy. Her favorite part of her job is getting to be creative with each patient and finding adaptations for her patients to be successful.
Lauren Yauch, DO, MPH
Pediatric Endocrinologist, Gillette Children’s
Lauren is a Pediatric Endocrinologist at Gillette Children’s Hospital and the University of Minnesota. She is originally from Indiana and completed her medical training throughout the Midwest. Most recently, Lauren completed her pediatric endocrinology fellowship at the University of Minnesota. She recently joined the neuromuscular team at Gillette to assist with the endocrine complications associated with neuromuscular disease, mainly supporting boys with Duchenne muscular dystrophy.
In addition to the neuromuscular clinic, Lauren provides general endocrine care, focusing on bone and growth concerns. She also take care of patients with type 1 diabetes at the University of Minnesota. At our workshop, Lauren will be highlighting the main endocrinology concerns associated with Duchenne Muscular Dystrophy.
Jamie Eskuri, MD
Neurology, Gillette Children’s
Dr. Jamie Eskuri is a child neurologist and neuromuscular specialist at Gillette Children’s. She grew up in Esko, Minnesota and attended the College of Saint Benedict for her undergraduate training. She received her MD degree at the University of Iowa Carver College of Medicine and extended her studies there to serve as the inaugural medical student research fellow in the Wellstone Muscular Dystrophy Cooperative Research Center – laying the foundation for her passion for working with patients with neuromuscular disease. Dr. Eskuri completed her child neurology residency at Boston Children’s Hospital and her neuromuscular fellowship at Beth Israel Deaconess Medical Center in Boston, Massachusetts.
Dr. Eskuri sees both pediatric and adult patients with neuromuscular diseases in her clinic and participates in several clinical research studies. In addition to her clinical and research work, she dedicates time to promoting provider professionalism and well-being.
At our workshop, Dr. Eskuri will discuss “Living Well with Duchenne, Now and in the Future.” She will also speak about several developments in the care and treatment of Duchenne that have changed the way patients live with their disease.
When: October 7, 2023
Where: Billings Clinic Health Conference Center, Mary Alice Fortin Health Conference Center, 2800 10th Ave North, Billings, MT 59101
Click here to view a tentative agenda for our day in Billings.
GUEST SPEAKERS:
- Dr. Elizabeth Wood: Clinical Trials Presentation
- Bobby Thurston (Social Worker): Resources Discussion
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Dr. Patricia Notario
Physical Therapist, Gillette Children’s
Dr. Patricia Notario attended medical school at Georgetown University and trained at Advocate Children’s Hospital outside Chicago in General Pediatrics with a special interest in children with special healthcare needs. While there, she started the hospital’s first complex care program. Since moving to Montana in 2017, she founded the Pediatric Complex Care Program at the Billings Clinic that integrated with the Muscular Dystrophy Association Clinic in 2019. In addition to her general pediatric practice, she leads a multi-disciplinary team in the care of over 100 medically complex patients from across Montana, Wyoming and North Dakota. She is passionate about providing excellent comprehensive care to her patients and their families, as well as advocating for her patients both in the office and on a community/state level.
When: November 11, 2023
Where: University of Missouri Health Care, RUSK Hospital Cafeteria, 315 Business Loop 70W, Columbia, MO 65203
GUEST SPEAKERS:
Dr. Dongsheng Duan
Curators’ Distinguished Professor and Margaret Proctor Mulligan Professor, University of Missouri
Dr. Duan is the Curators’ Distinguished Professor and Margaret Proctor Mulligan Professor in Medical Research at the University of Missouri, School of Medicine, Department of Molecular Microbiology and Immunology. Dr. Duan is a fellow of the National Academy of Inventors and a fellow of the American Association for the Advancement of Science (AAAS). Dr. Duan received his Ph.D. in 1997 from the University of Pennsylvania. His research focuses on developing novel AAV vectors and gene therapy for Duchenne muscular dystrophy in small and large animal models. He received the American Society of Gene Therapy Outstanding New Investigator Award in 2006. He also received Spurgeon Distinguished Medical Research Award in 2004, the Chancellor’s Award for Outstanding Research and Creative Activity at the University of Missouri in 2009, the Honorary Medical Alumni Award in 2017, and the Excellence in Research Mentoring of Trainees Award in 2017.Â
Dr. Zarah Ner
Associate Professor of Pediatrics
Dr. Ner received her Medical Doctorate degree from the University Of The Philippines Manila. She sits on the American Board of Pediatrics/Pulmonology and American Board of Sleep Medicine. Conditions treated: Aerodigestive Disorders, Bronchopulmonary Dysplasia, Chronic Ventilator Dependence, Congenital Lung Disease, Interstitial Lung Disease, Pediatric Asthma, Pediatric Cystic Fibrosis, and Pediatric Sleep Disorders.
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Dr. Jane Emerson
Division Director, Pediatric Rehabilitation
Dr. Emerson received her Medical Doctorate degree from the University of Missouri School of Medicine. She sits on the American Board of Physical Medicine & Rehabilitation and American Board of Physical Medicine & Rehabilitation/Pediatric Rehabilitation. Conditions treated: Botox, Cerebral Palsy, Dystonia, Hyotonia, Muscular Dystrophy, Neuromuscular Diseases, Spasticity Management, Spina Bifida, Stroke, Traumatic Brain Injury.
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Dr. Vovanti Jones
Assistant Professor of Physical Medicine and Rehabilitation
Dr. Jones received her Medical Doctorate degree from Washington University. She sits on the American Board of Physical Medicine & Rehabilitation and is an Assistant Professor of Clinical PM&R. Conditions treated: Neuromuscular Diseases.
