Tip of the week: Speaking with the Experts: Elizabeth Roof, M.A., to present at June PWS Conference

This week’s PWS TIP focuses on utilizing resources in our community. It is important that we recognize and communicate with experts who can be helpful for professionals supporting individuals with Prader-Willi (such as staff at Latham Centers) and helpful for parents, guardians, and caregivers.

On June 1st, 2019, Elizabeth Roof will join Latham Centers and the Mac Pact in Connecticut at the Prader-Willi Syndrome: A Bright Future Conference. Elizabeth Roof, M.A., has been working with individuals with PWS for almost 25 years and has a wealth of experience. At Latham, she hosts monthly webinars on topics including hoarding, rumination, family work, shut downs, and more. Elizabeth also consults on individual scenarios and complicated cases.

Her session at the conference will focus on how to manage PWS behaviors. Elizabeth takes a hands-on, realistic approach to problem-solving issues like attention, compliance, repetitive behaviors, sensory seeking, skin picking, and other psychiatric issues both common and rare in PWS. She talks about strategies that work and focuses on consistency and follow-through. She also talks about general parenting self-care and supports.

After the conference sessions conclude, she will give opportunities for parents/guardians to meet her individually (for a fee, lottery selection process). Individual meetings with specialists like Elizabeth Roof are in high-demand, so we ask that interested conference participants email Katrina Fryklund, kfryklund@lathamcenters.org, your top choices and we will enter you in the lottery. If selected, we will send you an invoice before the conference, to be paid within five days. To sign up for this conference, please visit https://pwsabrightfuture.eventbrite.com.

More about Elizabeth: Elizabeth Roof, M.A. is a Research Associate at Vanderbilt University Department of Psychology and has been licensed as a Health Service Provider in TN since 1994. She currently directs several research programs with children and adults with Prader-Willi syndrome with Elisabeth Dykens. They have published many peer reviewed journal articles about many aspects of PWS across lifespan. For almost 25 years, Elizabeth has followed longitudinally over 350 children, teens and adults with PWS in research studies. Elizabeth has recruited many families across the country and Canada by providing individualized feedback information to families on issues such as behavioral and classroom intervention, effective parenting, IEPs and educational strategies, psychiatric medication in PWS, and residential placement and professional consultation for professionals and groups. She has helped manage many clinical trials in PWS and consults with sponsors to select appropriate outcomes and logistics for clinical trials in PWS. She has consulted with Latham Centers since 2015. Elizabeth has presented at many state, national, and international PWS conferences, and for FPWR in the U.S., Australia, and Canada.


Patrice Carroll is Latham Centers’ world-renowned Prader-Willi syndrome specialist. She works with Latham’s residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices. Do you have questions for our PWS specialist? Submit your “tip” topics or general questions to TipTopics@LathamCenters.org.

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