We are excited to announce that we are hosting three, in-person Family Workshops in 2022. While we are planning to be back on the ground with events in 2022, these plans are subject to change depending on COVID-19 safety guidelines.
Dates and locations are subject to change
When: April 30, 2022
Where: Irvine Marriott Hotel – Irvine, California
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.
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.
Through these workshops, we empower patients and families with the knowledge needed to be their own best advocates, spread awareness about Duchenne in the medical field, and help accelerate research and development.
During these workshops, you’ll hear from Duchenne clinicians, pharmaceutical companies in the Duchenne space, and local experts on topics like clinical trials, standard of care, physical therapy, adaptive sports, and much more. You’ll also learn about helpful resources and our direct service programs such as Camp Promise, Jett Giving Fund, and Community Ambassadors.
For the safety and wellbeing of our community amid the COVID-19 outbreak, we began holding our educational programming virtually.
This year, as we bring back our in-person workshops, we will also continue to host webinars virtually in order to reach more families across the world. Check out our upcoming webinars or previous recordings below!