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Susan Hedstrom

Executive Director

Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of proactive and tireless individuals to accelerate PWS research and change the future of PWS. Under Susan’s leadership, over $15 million has been raised for PWS related research.

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Theresa V. Strong, Ph.D.

Director of Research Programs

Theresa V. Strong, Ph.D., is one of the founding members of FPWR.  She received a B.S. from Rutgers University and a Ph.D. in Medical Genetics from the University of Alabama at Birmingham (UAB).  She performed postdoctoral studies at the University of Michigan in the laboratory of Francis Collins, M.D., Ph.D., studying the molecular basis of cystic fibrosis and Huntington disease. After her postdoc, she returned to the faculty at UAB, where her laboratory focused on developing gene therapy approaches for cancer. She was Director of UAB’s Vector Production Facility and a Professor in the Department of Medicine.  In  2016, Theresa transitioned to a full time position as Director of Research Programs at FPWR.  She remains a volunteer Adjunct Professor in the Department of Genetics at UAB.  She and her husband Jim have four children, including a young adult son with PWS.

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Jessica Bohonowych, Ph.D.

Associate Director of Research Programs

Jessica Bohonowych is a graduate of Duke University, and holds a PhD in Pharmacology and Toxicology at the University of California, Davis. Jessica manages FPWR’s grant portfolio, supporting research into the biological mechanisms that underly PWS symptoms, developing tools for PWS research, and advancing new therapies for PWS. Jessica has also led the development of the Global PWS Registry. Data from the Registry is being used to improve clinical care for our loved ones with PWS, supporting clinical trials, is being shared with regulatory agencies including the FDA, and has been used in 6 peer-reviewed publications in the scientific literature to date.

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Lauren Schwartz, Ph.D.

Behavior and Mental Health Programs

Lauren Schwartz, Ph.D. is a clinical psychologist and has been the driving force behind FPWR’s work to improve mental health and behavior for those with PWS. Dr. Schwartz coordinated the PWS Mental Health Strategy Workshop in 2015, which spurred significant new research into PWS mental health concerns. In addition, she created FPWR’s Mental Health Guidebook and Social Skills tip sheets, which have been utilized widely by parents and clinicians. Lauren oversees FPWR’s funded research projects focused on mental health and behavior, and co-leads the PWS Clinical Trials Consortium. She has spearheaded efforts to develop new measures of behavior that are currently being used in PWS clinical trials. Lauren is also on the faculty at the University of Washington School of Medicine in the Department of Rehabilitation Medicine where she does clinical work, teaching and research.   She and her husband Mark, have two children, including a daughter with PWS. 

Marc Ridilla, PhD

Marc Ridilla, Ph.D.

Research Program Manager

Marc Ridilla joined FPWR in 2022 as a Research Program Manager.  After earning his B.S. from Rice University and PhD from Purdue University, Marc conducted postdoctoral research on molecular mechanisms of dengue virus infection with Ken Jacobson and Nancy Thompson at the UNC School of Medicine and subsequently on corneal wound healing and exfoliation glaucoma with Audrey Bernstein at SUNY Upstate Medical University.  Marc has also served as Director of the Biological Materials Facility at the Brandeis Materials Research Science and Engineering Center and as Principal Scientist at Repair Biotechnologies.  He is currently based near Syracuse, NY, with his wife and two children.

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Lisa Matesevac

PATH Study Coordinator

Lisa Matesevac, AuD joined FPWR in October 2018 as the PATH for PWS Coordinator.  In this role, Lisa facilitates enrollment of individuals with PWS ages 5 years and older in this longitudinal natural history study documenting serious medical events in PWS with the goal being to inform development and clinical trial design for potential new treatments in PWS.  The PATH for PWS program has been instrumental in documenting issues surrounding hyperphagia, food security, behaviors, and serious medical events in PWS. Data collected from the PATH study has been compared to data from PWS clinical trials and supports the long-term benefits of a potential new treatment for PWS: DCCR. Furthermore, Lisa has used PATH data to analyze the variability of hyperphagia in adults and has collected normative data to establish a baseline for hyperphagia.

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Caroline Vrana-Diaz, Ph.D.

Research Project Coordinator

Caroline Vrana-Diaz, Ph.D. is the Research Project Coordinator for the Foundation for Prader-Willi Research. She received her Ph.D. in Epidemiology from the Medical University of South Carolina (MUSC) in 2019. Caroline supports several of FPWR’s research programs. In addition to coordinating advocate reviews for FPWR’s grant program, Caroline has co-authored papers that advance our understanding of PWS including vision problems, high levels of caregiver burden, and the natural history of weight gain among people with PWS. Caroline facilitated the establishment of the PWS-Clinical Investigation Collaborative, a collaborative group of clinicians tasked with improving standards of care for people with PWS and is currently supporting the PWS Genome Project that is sequencing the genomes of 50 individuals with PWS.

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Melissa Demand

Director of Community Engagement

Melissa became involved with FPWR in 2014 after her son, Kemett, was diagnosed with PWS.  That year she hosted her first One SMALL Step Walk which raised over $115,000 and earned herself the honor of hosting the FPWR conference in Austin, TX in 2015.  Melissa has over 15 years of fundraising and development experience and a Masters in Social Work from The University of Texas with an emphasis on Community and Administrative Leadership.   Melissa manages FPWR's donor stewardship and coordinates FPWR's annual family conference. 

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Jacqueline Mizon

Director of National Events and Endurance Programs

Jacqueline joined FPWR in 2016 and has over 10 years of endurance fundraising and event management experience. Jacqueline oversees the expansion and successful execution of all major events and endurance opportunities in support of the organization’s fundraising goals. Jacqueline is a graduate of California State University, Northridge with a B.A. in Communication Studies.  

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Preslee Coleman

Fundraising Campaign Manager

Preslee has a Bachelor's and Master's Degree in Fundraising and 8 years of experience in development and event planning. She oversees fundraising campaigns to provide support and encouragement to our fundraising hosts. She has previous experience working with children and non-profits of various sizes and is excited to help our fundraisers maximize their efforts in raising funds for the Foundation for Prader-Willi Research. 

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Natalie Brenneman

Fundraising Coach

Natalie has been involved with FPWR since the birth of her son, Evan, in 2015. In addition to co-hosting an annual One Small Step event, she has hosted a variety of other grassroots fundraising events including t-shirt fundraisers, birthday parties, silent auctions, raffles, March Madness pools, motorcycle rides, baby bets, charity garage sales, a wood painting workshop, tailgate parties, and virtual fundraisers. Natalie is inspired and motivated to help raise funds for research and is here to help our community reach its fundraising goals. 

Rachael Vidal

Rachael Vidal

Development Coordinator

Rachael Vidal holds a Master of Science in Social Work from the University of Texas at Austin with a concentration in administration and policy practice. There, she interned at a school district working with students in a clinical setting as well as at another school district working in development and fundraising. She also has previous experience working with children and caretakers as a pre-school teacher. She is delighted to be in a role at FPWR that allows her to continue engaging with families. Currently, she is a licensed social worker in the state of Texas.

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Sarah Peden

Volunteer Chair Community Leadership Team

Sarah Peden became involved with FPWR shortly after the diagnosis of her daughter, Lily in late 2009. Sarah has held multiple roles with our organization and is now chair of our Community Leadership Team - a group of dedicated parents who help engage the PWS community.