May Town Hall
This month’s Town Hall, in honor of Mental Health Awareness Month, we focused on mental health and grief in the EB and Rare Disease space. Mental Health is often overlooked, but it is something that deeply impacts every member of our community in a variety of different ways, Whether you are someone living with EB, or a parent, caregiver, sibling, aunt, grandfather, etc, of someone living with EB, someone who has lost a child to EB, or are someone working with the EB community as a doctor or researcher or someone leading a clinical trial.
Our speakers:
Anne Davis, Psy.D.
Dr. Anne Davis is the Executive Director of Heroes for Hallie Grace, a nonprofit whose mission is to raise awareness, fund important research, and improve the quality of life for individuals and families impacted by EB in memory of her daughter Hallie Grace and all EB warriors. Anne is also the host of The Grace, Grief, and Grit podcast as well as a licensed Clinical Psychologist with the Trauma Recovery Program at the WJB Dorn Veterans Medical Center.
James Feinstein MD, MPH
Dr. Jamie Feinstein is a Primary Care Pediatrician at Children's Hospital Colorado for children with special healthcare needs and an NIH-funded physician-scientist committed to advancing pediatric medication safety research. Jamie is also Medical Director of the Colorado Child Health Research Institute Director and Pediatric Director of Children’s Hospital Colorado's EB Program.
Our speakers:
Anne Davis, Psy.D.
Dr. Anne Davis is the Executive Director of Heroes for Hallie Grace, a nonprofit whose mission is to raise awareness, fund important research, and improve the quality of life for individuals and families impacted by EB in memory of her daughter Hallie Grace and all EB warriors. Anne is also the host of The Grace, Grief, and Grit podcast as well as a licensed Clinical Psychologist with the Trauma Recovery Program at the WJB Dorn Veterans Medical Center.
James Feinstein MD, MPH
Dr. Jamie Feinstein is a Primary Care Pediatrician at Children's Hospital Colorado for children with special healthcare needs and an NIH-funded physician-scientist committed to advancing pediatric medication safety research. Jamie is also Medical Director of the Colorado Child Health Research Institute Director and Pediatric Director of Children’s Hospital Colorado's EB Program.
May Town Summary
Dr. Anne Davis begins this month’s town hall with a brief background on her and her family’s story. She then provides an overview of several key mental health and wellness topics, including how to process emotions; the who, what, how, and why of grief; how and where to seek help; and how to support those around you who may be experiencing grief. Anne concludes by sharing insights from her personal journey through grief, along with helpful resources from the community.
Dr. Jamie Feinstein follows with a discussion on the importance of mental health support for individuals living with EB and their caregivers. He emphasizes that therapy, counseling, and trauma-informed care are essential components of comprehensive EB treatment. Jamie also touches on the use of medications when needed and highlights the critical role of pediatric palliative care in enhancing quality of life - not just at the end of life, but every day. He underscores the value of memory-making and the idea that grief and joy can coexist. Jamie concludes the town hall by reading a personal short essay that reflects the many emotions he has experienced while caring for children with EB and navigating grief.
Dr. Jamie Feinstein follows with a discussion on the importance of mental health support for individuals living with EB and their caregivers. He emphasizes that therapy, counseling, and trauma-informed care are essential components of comprehensive EB treatment. Jamie also touches on the use of medications when needed and highlights the critical role of pediatric palliative care in enhancing quality of life - not just at the end of life, but every day. He underscores the value of memory-making and the idea that grief and joy can coexist. Jamie concludes the town hall by reading a personal short essay that reflects the many emotions he has experienced while caring for children with EB and navigating grief.
Resources
- Trauma Informed Care for Individuals with EB - Read Article Here
- Children’s Hospital Colorado developed videos for school classrooms, to help make the school expereince more supportive for students with Epidermolysis Bullosa.
- For Students - Watch Here
- For Teachers/Nurses/Caregivers - Watch Here
EBRP live Town Halls
Our monthly Live Town Halls help drive research and awareness with informative discussions led by trusted specialists and advocates in the EB space. Topics include current research, clinical trials, caring for loved ones with EB, and more. Town Halls are open to anyone interested in learning more about EB and the future of EB treatment and care. Check out more of our Town Halls here.
To register for our next Live Town Hall, click here.
To register for our next Live Town Hall, click here.
