Caregiver Wellness: Setting Yourself Up for Success with Self-Care Presented by Sarepta

When:

November 29, 2022 1:00PM

Join Jett Foundation’s Community Webinar Series on November 29 at 1PM EST as Sarepta Therapeutics presents on caregiver wellness and setting yourself up for success with self-care.

When a child is diagnosed and living with a rare disease like Duchenne, the caregiver’s self-care often becomes less of a priority. Caregivers have many important day-to-day tasks on top of regular routine. Research has proven that a caregiver’s well-being is essential to the care of the child living with a rare disease. “Caregiver Wellness” is a webinar that will feature Dr. Chrissy Salley, a pediatric psychologist with experience working with caregivers, and JB, a caregiver of a teen who is living with Duchenne. They will discuss the common barriers to self-care and offer accessible ways to overcome them.

Attendees will gain:

Awareness into the natural instincts of parents and caregivers.

Insight into the personal experience of being a Duchenne caregiver, as shared by the parent of a child living with Duchenne.

Advice for ways to acknowledge and address caregiver stress and strategies for creating a mindset that welcomes self-care into a caregiver’s day-to-day.

Tangible takeaways (tools, templates, resources, summary) for implementing next steps.

Caregiver Wellness: Setting Yourself Up for Success with Self-Care
Presented by Sarepta
Tuesday, November 29, 2022 | 1:00PM – 2:00PM EST

Guest Speaker

Dr. Chrissy Salley is a Pediatric Psychologist, Director of Clinician Engagement and Outreach at Courageous Parents Network and a Clinical Assistant Professor for the Department of Child and Adolescent Psychiatry at Hassenfeld Children’s Hospital at NYU Langone. Chrissy brings to CPN her experience as a psychologist who has worked in pediatric hospital settings with families and children with chronic health issues. Over the years, she has developed expertise in delivering support and intervention to parents and caregivers of children with complex medical needs.

Much of Chrissy’s clinical and research background has involved children with cancer and other serious and potentially life-limiting conditions. She is actively involved in the Society of Pediatric Psychology, Division 54 of the American Psychological Association. In addition to co-authoring the Psychosocial Standard of Care for Children with Cancer and their Families on parents’ needs, she has founded a professional group of pediatric psychologists who are committed to supporting parent caregivers through clinical intervention, research, education, and outreach. She also collaborates with colleagues nationally and internationally on efforts to improve the illness experience for children and their families, and publishes on these topics; this is work she continues in her role at CPN.

Chrissy received her PhD in Clinical Psychology from The Ohio State University. She is a Clinical Assistant Professor at Hassenfeld Children’s Hospital at NYU Langone in New York City where she is involved in collaborative educational and research initiatives.

Guest Speaker

JB Crowley is the mother of an individual who lives with Duchenne, as well as a SareptaCircle Engager. She lives in Virginia with her husband and two children. Her oldest, Charlie, is 14 years old, and was diagnosed with Duchenne at three years olf. JB is a marketing professional and is immersed in the local nonprofit and fundraising community. She and her family spend their weekends volunteering, and she is involved in a number of programs through her church. JB is optimistic and imaginative: During Charlie’s first blood draw, she told him that if his blood was red, it meant he was a superhero. Imagining superpowers is just one of the many ways that she and her family have decided to take control of their journey. Her story is animated and encouraging, and she articulates the power of joy and gratitude in the face of hardship.

Our Community Webinar Series is focused on ensuring that our Duchenne community is better prepared for those unexpected moments, challenging medical decisions, and difficult stages when on a Duchenne journey.

No one ever expects Duchenne and there is no correct way to tackle a diagnosis, but we can always better prepare. This webinar series is an opportunity to equip yourself with more knowledge, resources, and tools for those real-life, often unanticipated, scenarios.