Family Workshops

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

Register by clicking here!

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.

Stay tuned for more speakers and workshop details!

When: November 12, 2022

Where: Dallas Marriott Suites Medical/Market Center – 2493 N Stemmons Fwy, Dallas, TX 75207

Texas Registration and Agenda Coming Soon!

GUEST SPEAKERS:

Susan Caldwell

Duchenne Mom and Jett Foundation Community Ambassador

Susan Caldwell is a single parent to Ryan Michael (14) who has Duchenne Muscular Dystrophy. Susan can’t wait to send her son to Jett Foundation’s Camp Promise in the near future. In addition to working full time, Susan is active in her church and son’s Boy Scouts’ community. Susan has also been a Jett Community Ambassador for one year, and hopes to create more recognition around Jett Foundation’s support for Duchenne families. She enjoys attending Porch Nites and educational conferences to learn more about Duchenne.

Tammy Crain

Duchenne Mom and Jett Foundation Community Ambassador

Tammy has been part of the Duchenne community for 17 years. Her son, Tristan, was diagnosed with Duchenne muscular dystrophy at the age of two. Tammy says her family of three has mourned and rejoiced while continuing to learn how to navigate this life. 

One of the most important things to Tammy is getting families the help and information they need as soon as possible. She says, “I feel that our families have to jump through so many hoops to get any type of assistance, be it financial, physical, or emotional. Home modifications, equipment,
and accessible vehicles are a struggle to obtain. I am hoping to
help others find their way through this.”

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. 

Stay tuned for more speakers and workshop details!