When: April 30, 2022
Where: Irvine Marriott Hotel – Irvine, California
Download the Irvine Family Workshop Agenda
GUEST SPEAKERS:
Erik Henricson, PhD, M.P.H
Associate Director for Clinical Research, UC Davis Department of Physical Medicine
Dr. Henricson joined us in Irvine, CA to help families understand more about behavior in Duchenne as well as preparation for clinical trials. He presented on the use of Bayley-III development measurement and online screening tools to characterize early childhood behavioral phenotype in boys with Duchenne muscular dystrophy, as well as brain dystrophin networks.
Sara Aluffi
Duchenne Mom and Founder of Joaquin’s Warriors
Sara Aluffi is the mother of Joaquin Aluffi (8) who lives with Duchenne muscular dystrophy. Sara provided insight on living with Duchenne and participating in a clinical trial from a parent’s perspective. The Aluffi family launched their nonprofit, Joaquin’s Warriors, in 2018 after facing the challenges of Duchenne muscular dystrophy for years. Their nonprofit aims to raise money for Duchenne research, and they recently partnered with Jett Foundation’s Jett Giving Fund program.
When: October 1, 2022
Where: Courtyard by Marriott Denver Cherry Creek – 1475 S Colorado Blvd, Denver, CO 80222
GUEST SPEAKERS:
Christine Petranovich, PhD
Pediatric Neuropsychologist, Dept. of Rehabilitation Medicine, Children’s Hospital Colorado
Dr. Christine Petranovich also serves as an assistant professor in the University of Colorado Denver School of Medicine. At Children’s Hospital, Dr. Petranovich completes neuropsychological evaluations for children and teens with complex medical histories, including acquired brain injury and neuromuscular disorders. Her research is focused on behavioral, emotional, and cognitive outcomes in children and adolescents with conditions that impact brain functioning. Dr. Petranovich is particularly interested in understanding and supporting the transition to adult life for teens with complex medical problems.
Tess Simpson, PhD
Pediatric rehabilitation psychologist at Children’s Hospital Colorado
Dr. Tess Simpson is a pediatric rehabilitation psychologist at Children’s Hospital Colorado and an assistant professor at the University of Colorado School of Medicine, Department of Physical Medicine & Rehabilitation. Her clinical and research interests focus on promoting positive child, adolescent, and family adjustment for patients with rehabilitation health needs.
Andrea S. Miele, Ph.D
Assistant Professor of Pediatrics, University of Colorado School of Medicine
Dr. Andrea Miele, is an Assistant Professor of Pediatrics at the University of Colorado School of Medicine and serves as a Pediatric Neuropsychologist in the Division of Neurology. Dr. Miele has primary clinical interests in rare genetic disorders, and she specializes in working with children with neuromuscular diseases, including Duchenne muscular dystrophy, as well as the developmental and epileptic encephalopathies.
She also devotes a portion of her time to working with children with metabolic disorders, neurocutaneous disorders, and those who are preparing for, or who have already undergone, bone marrow transplant for hematology-oncology disease. Her research interests include neuropsychological functioning in children with the 8p and Ring14 Syndromes as well as treated and untreated neuromuscular disease, Batten Disease, and mutations in the genes STXBP1 and SLC6A1.
When: November 12, 2022
Where: Dallas Marriott Suites Medical/Market Center – 2493 N Stemmons Fwy, Dallas, TX 75207
GUEST SPEAKERS:
Kaitlin Batley, MD
Assistant Professor of Pediatrics and Neurology, UT Southwestern Medical Center
Dr. Kaitlin Batley is an Assistant Professor of Pediatrics and Neurology and the Director of the Pediatric Neuromuscular Program at UT Southwestern Medical Center in Dallas, TX. Dr. Batley specializes in the diagnosis and longitudinal care of children with neuromuscular disorders and is passionate about advancing research in the Duchenne community. At our Texas workshop, she will be speaking about mental health and psychosocial care in Duchenne muscular Dystrophy.
Melanie Valle, PT, DPT
Pediatric Physical Therapist, Children’s Health System of Texas
Dr. Melanie Valle graduated from Baylor University with her undergraduate degree in 2012 and the University of North Texas Health Science Center in 2016 with her Doctorate of Physical Therapy. Melanie has worked as an out-patient pediatric physical therapist at Children’s Health System of Texas in Dallas, TX for the past six years. She serves a wide variety of pediatric patients from birth to adulthood and has advanced training in serial casting, body weight support gait training, and aquatics. In addition, Melanie has been a physical therapist in the Children’s Health multidisciplinary Neuromuscular Clinic in Dallas, TX for the past six years. Melanie specializes in neuromuscular disorders and is trained as a clinical evaluator for a wide range of industry sponsored pharmaceutical trials with Duchenne muscular dystrophy and Spinal Muscular Atrophy.
Melanie has been a part of the medical staff for the Muscular Dystrophy Association summer camp at Camp John Marc in Meridian, TX for two summers. Melanie has also serves as an adjunct faculty with the Baylor University Physical Therapy program pediatric course, Management of the Pediatric Patient. Melanie’s hobbies include reading, outdoor activities, hiking and bike riding, art, music, traveling, and spending time with her husband, Miguel, four-year old daughter, Nina, and dogs, Mia and Chevy.
Paula Florczykowski
Family Impacted by Duchenne, Founder of Finn’s Friends
Paula is a mother of three children. She and her husband, Dan, currently reside in Longview, Texas where she has run her non-profit, Finn’s Friends, since 2020. The family has dedicated their life to helping find a cure for Duchenne muscular dystrophy as well as help families who need assistance along the way. They are a “small but mighty” organization who is determined to fight for Finn and all his friends battling Duchenne!
Paula is very excited to be able to share her story and perspective in Dallas on November 12!
