Welcoming Audrey Thurm to the Medical Advisory Council
We are delighted to announce the addition of Audrey Thurm, Ph.D., to our Medical Advisory Council. Dr. Thurm is a psychologist at the NIH and has worked closely with Medical Advisory Chair Dr. Alison Boyce to provide support to the families enrolled in the FD/MAS Natural History study that Dr. Boyce oversees at the NIH. “It’s becoming increasingly clear that social, emotional, and behavioral health is critical to an individual’s well-being,” said Dr. Boyce, “Dr. Thurm is wonderful with our patients. She spends a lot of time with each family and is very thoughtful in all her work.”
More on Dr. Thurm’s Career
Dr. Thurm is the Director of the Neurodevelopmental and Behavioral Phenotyping Service in the Office of the Clinical Director, part of the National Institute of Mental Health (NIMH)’s Intramural Research Program (IRP). After receiving a B.S. in human development from Cornell University, she received training in child clinical psychology at DePaul University, trained as an intern at Boston Children’s Hospital/Harvard Medical School, and conducted a post-doctoral fellowship at Johns Hopkins School of Medicine. She has been at NIMH since 2002, serving in the extramural program until 2006, at which time she moved to the IRP to engage in research on autism spectrum disorder (ASD) and other related neurodevelopmental disorders.
In addition to being the Principal Investigator on several protocols through the NIMH, Dr. Thurm serves as associate investigator on a variety of natural history and treatment studies of rare and undiagnosed genetic conditions in the intramural research program. She has worked closely with Drs. Alison Boyce and Michael Collins to support the patients enrolled in their FD/MAS natural history study.
Getting to Know Dr. Thurm and her view on FD/MAS care:
Q: What role does social/emotional/behavioral health play in the overall care plan of someone diagnosed with a rare disease? Why is it so important?
Having a rare genetic condition means that there is something a family and the individual need to manage in different ways as they grow up. The impact of the condition on one’s quality of life may be negligible or it may be profound. This may include the impact of physical effects, and it also may include the neurological effects of the condition. Regardless, having a chronic condition can affect a person’s ability to both manage and cope, and it can affect a family in significant ways. Monitoring the whole family’s social and emotional well-being and intervening as needed should be part of holistic medical care, including engagement with professionals who can focus on this area when needed. It is so important to focus on this area because health may be defined as “the dynamic balance of physical, mental, social, and existential well-being in adapting to conditions of life and the environment.”
Q: What advice do you have for people with rare, chronic diseases (or for their caregivers) as they seek out a therapist to address their social/emotional/behavioral health needs?
Just like it may be difficult to find a provider who knows about your health condition, it may take time to find a provider who is a good fit for a person’s developmental needs and their needs regarding treatment goals within the context of their condition and larger environmental context.
We would like to take this moment to add more mental/emotional/behavioral health providers to our Physician’s Database. We welcome community recommendations for providers you’ve had a positive experience with via our recommendation form.
If you’d like to read more about ideas regarding changing definitions of health within the context of chronic conditions and disability, check out this article.