PRISMS - The Team

Lynda Kilian
Staff

Lynda joined PRISMS in 2023 and is responsible for a large part of the administrative, financial and state fundraising compliance functions, as well as communications and biennial conference planning. Lynda has over 40 years of professional experience in a wide array of areas, including administrative, financial, publications, human resources, and creative. She previously owned/operated a successful event decor rental and decorating business. Lynda and her husband live in the Minneapolis area as empty nesters and have two adult daughters. She is a grandmother of two and loves spending time with her grandsons whenever possible. She enjoys her time with family and friends and likes to cook, entertain, read, golf and travel.

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Barbara Haas-Givler, MEd, BCBA
Professional Advisory Board

Geisinger’s Department of Developmental Medicine, Lewisburg, PA
Barbara Haas-Givler is a board certified behavior analyst and Director of Education & Behavioral Outreach at Geisinger’s Department of Developmental Medicine in Lewisburg, PA. Ms. Haas-Givler has extensive experience in special education, serving in many different capacities over the course of her career, including classroom teacher, administrator, educational consultant, behavior analyst, and research associate for clinical pharmaceutical trials. Ms. Haas-Givler frequently presents at local and national conferences and provides consultations and trainings on strategies to support students with genetic syndromes. She has co-authored several publications on topics related to genetic syndromes, including frequently cited articles on the educational and behavioral manifestations of Smith-Magenis Syndrome.

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Carmela Saunders
Community Engagement Manager

Carmela joined the PRISMS team in 2025. She earned a BS in Business Administration with a double concentration in Finance and Marketing from the University of Delaware. She has over 30 years of corporate experience in leading financial operations, strategic planning, budgeting and financial analysis.

She has always been passionate about community development and social impact. Prior to becoming part of PRISMS, Carmela founded a NC nonprofit and brings with her over 10 years of experience in leadership, management, fundraising, financial planning and program development.

Carmela lives in Raleigh, NC. In her spare time, she enjoys exercising, traveling, the beach and mountains, hiking and spending time with family and friends.

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Michelle Larscheid
Executive Director

Michelle Larscheid has been with PRISMS since 2020 serving in many roles. Michelle has played an integral part in every aspect of PRISMS, ensuring that each initiative aligns with the organization’s mission, vision, and core values. Michelle holds a B.S. in Journalism and Mass Communications from Iowa State University with minors in English and Sociology.

With a career spanning three decades, she has built expertise in public relations, marketing, sales promotion, buinsess leadership and event planning across a range of industries, including financial services, publishing, and entertainment. Prior to her work with PRISMS, Michelle co-created and successfully ran an event rental and decorating business for nine years.

“I have always had a passion for helping others. Working with the SMS community has given me a deep appreciation for the families we serve and has ignited a passion for raising awareness about Smith-Magenis Syndrome.”

Originally from Minnesota, Michelle now resides in Raleigh, NC, with her family. She enjoys traveling, golfing, hosting parties attending live music events, walking her dog, and spending quality time with her loved ones.

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Michelle Lee
Awareness Committee

Michelle lives in League City, Texas with her husband Kerry and their two sons Dalton (SMS) and Xander. She is a former educator who stays home and homeschools her boys and balances her time between normal homeschooling lessons, martial arts classes, church and other social activities.

She found PRISMS shortly after Dalton was diagnosed at age 8 in 2011 and attended her first conference. She has worked on a few small projects for PRISMS and is also an admin to a small SMS awareness Facebook page her sister started shortly after Dalton was diagnosed.

When not homeschooling the boys, She is training at a local martial arts school and volunteering as an assistant at their black belt graduation programs. She also hosts their annual 5K as the race director.

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Jason Michaud
Member at Large

Jason joined the PRISMS Board of Directors in January, 2022 as an at-large member. Jason’s goal is to be a part of the work that brings resources and support to SMS families. PRISMS has been the greatest gift to his family on their SMS journey and his desire to give back in order to help others on their journey is what inspired him to join the board. Jason and his wife Charlene reside in Sherwood Park, Alberta, Canada with their two sons Ryan (13), Nikolas (11) and their daughter Jillian (9). Jillian was diagnosed at the age of 3.5 years with SMS. Jason is proud to be the first Canadian board member for PRISMS and in his spare time he enjoys coaching and playing ice hockey in the winter and camping in the summer.

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Margaret Miller
Founding Member

Margaret Miller is the Founding President of PRISMS. She began PRISMS along with her husband Scott Miller, Ann Smith, and Brenda Finucane. She was inspired to help develop this organization after receiving the diagnosis of SMS for her infant daughter. There were no SMS organizations at that time and very little information was available. So her desire to start PRISMS came from the need to understand more about SMS and to connect families with researchers and other professionals. She has served on the PRISMS Board as President, Past-President, Vice President, Founding Board Member, (currently), and Board Member at Large. Margaret has helped to chair and plan eleven international conferences and ten research symposiums. She has been an invited speaker on SMS at educational conferences, college seminars, and the National Institutes of Health. Margaret is passionate about working closely with researchers, professionals, industry, and pharmaceutical leaders and believes that we can only make greater strides in our mission when we work together. Margaret lives in a suburb of Washington DC, with her husband and daughter.

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Theresa Wilson, MS, RD
Staff

Theresa Wilson is a registered dietitian with more than 15 years of experience in pediatric obesity research. Currently, she works as a research coordinator in the Molecular and Human Genetics Department at Baylor College of Medicine. Her responsibilities include management of the Smith-Magenis Syndrome Patient Registry, as well as other studies for individuals with SMS. Theresa is compassionate in her work with families affected by genetic conditions, as the mother of two children with genetic diagnoses.

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Jackie Fallenstein
Vice President

Jackie became a member of PRISMS shortly after her son, Michael, was diagnosed in 2010, at 7 months old. She attended her first PRISMS conference in Denver in 2012 and has attended nearly every conference since then. Jackie enjoys connecting with local SMS families, organizing an SMS mini-conference in Minneapolis and working to establish an SMS Clinic in the Twin Cities area. She is grateful for the support PRISMS has provided to her family over the years and is excited to work on the board to extend this support to other families. Prior to being a stay-at-home mom, SMS caregiver and community volunteer, she worked in marketing. She is now attending graduate school to become a licensed professional counselor. She enjoys almost any outdoor activity and reading novels and historical fiction. Jackie and her husband, John, live in the Minneapolis, MN area with their sixteen-year-old daughter and Michael, who is now twelve years old.

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Denien Rasmussen
Fundraising Committee

Denien became a member of PRISMS in 2008, when her son, Matthew, (then four) was diagnosed with SMS. She attended her first PRISMS conference that year in Virginia, and has been to every conference since then. In 2010, she and Matthew joined Ann Smith at the NIH for the Bright Light Sleep Study. Denien organized the “PRISMS Manna Script Gift Card Program” and created the “IT worked for me” section in the PRISMS’ newsletters. Denien is also the Midwest Regional Rep for PRISMS. She was invited to speak at the Northwest Special Recreation Association (NWSRA) to educate the staff about SMS. She is an active participant and resource for Palatine School District 15 Multiple Needs Program. Professionally, Denien is the Chief Operating Officer and Chief Compliance Officer of R.W. Smith & Associates, LLC where she has worked for more than 31 years. She and her husband, Jim, live in Palatine, IL and are the parents of 12-year old twin boys, Matthew (SMS) and Michael.

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Brandon Daniel
Immediate Past President

Brandon joined the PRISMS board in January 2015, assisting with fundraising and taking on the role of secretary in January 2016. He was elected President in 2019. Brandon’s second term as President concluded in December 2023 and he has since moved into the Immediate Past President board role. Brandon is the strategic sales manager for Ag-Power, Inc., a John Deere dealer. Brandon currently serves as Chair for his town’s planning and zoning commission. He and his wife, Dawnda, live in Prosper, TX, a suburb of Dallas. They have three boys, ages 19, 17, and 10. Their seventeen-year-old son Coulter, was diagnosed with SMS in 2007.

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Sarah Elsea, PhD
Professional Advisory Board Chair

Dr. Sarah Elsea is a professor of Molecular and Human Genetics, and senior director of Biochemical Genetics at Baylor College of Medicine in Houston, TX. She is a board-certified biochemical geneticist by the American Board of Medical Genetics. Dr. Elsea is an educator, training students at all levels, from high school to graduate and medical students to physicians. She also provides clinical consultations and focuses her research efforts towards characterizing Smith-Magenis syndrome and related genetic neurodevelopmental disorders. Dr. Elsea’s lab identified RAI1 as the causative gene for SMS and has targeted research efforts toward understanding the function of RAI1, particularly the role of RAI1 in circadian rhythm, metabolism, and obesity, as well as approaches to therapies for SMS. Her collaborative work with Dr. Foster also assesses caregiver and sibling concerns in families of children with developmental disabilities. The SMS Patient Registry, collecting natural history data about individuals with SMS, is housed in Dr. Elsea’s lab at Baylor College of Medicine.

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Ann C.M. Smith, MA, DSc (Hon), CGC
PAB Chair Emeritus

National Human Genome Research Institute
National Institutes of Health (NIH), Bethesda, MD
Ann Smith is a board certified genetic counselor and internationally recognized leader in the field of medical genetics and genetic counseling for over 40 years. Now retired from the medical school faculty at Georgetown University (1994-2008), Ann continues to work as a senior genetic counselor under contract to the National Human Genome Research Institute (NHGRI) in the Office of the Clinical Director, dividing her time between clinical and research activities at the National Institutes of Health (NIH) in Bethesda, MD. She heads the collaborative NIH multidisciplinary SMS research team of basic science clinical researchers, serving as Adjunct Principal Investigator of two SMS related protocols (01-HG-0109 SMS natural history study; 07-HG-0076 Phase I sleep treatment trial). As a founding member of PRISMS in 1992, Ann chaired the Professional Advisory Board (PAB) until 2011, and now serves as PAB Emeritus Chair, having dedicated over 3 decades of her professional career to the study of SMS, the syndrome she co-discovered in early 1980’s.

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Kerry Boyd, MD, FRCPC
Professional Advisory Board

McMaster University, Michael G. DeGroote School of Medicine, Hamilton-Niagara region, Ontario, Canada
Dr. Kerry Boyd is a psychiatrist who has dedicated her career to the field of developmental disabilities across the lifespan. She has been working with people with SMS for over 15 years and has been privileged to be affiliated with PRISMS since 2008. She is an Associate Clinical Professor for the Department of Psychiatry and Behavioural Neurosciences at McMaster University. She works with McMaster Children’s Hospital, Niagara Health and Bethesda Services in the Hamilton Niagara region. As an AMS Phoenix Project Fellow, Dr Boyd rallied a network of partners to develop the Curriculum of Caring for People with Developmental Disabilities to create web-based resources found at CommunicateCARE.machealth.ca.

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Nancy Raitano, PhD
Professional Advisory Board

Nancy Raitano Lee, PhD, is a clinical child psychologist and associate professor of Psychology at Drexel University who specializes in developmental neuropsychology. She received her Bachelor of Science Degree in Human Development and Family Studies from Cornell University and her doctorate in Clinical Child Psychology from the University of Denver. Her research aims to augment knowledge about the causes and correlates of neurodevelopmental disorders through the use of innovative neuropsychological and neuroimaging technologies. While most of Dr. Lee’s research to date has focused on youth with other neurogenetic syndromes, she is currently collaborating with PRISMS professional advisory board member, Ann Smith, on a project in which they are examining the occurrence of autistic traits in youth with SMS and other neurogenetic syndromes. Dr. Lee is enthusiastic about doing more research focused on SMS and is looking forward to contributing to the PRISMS professional advisory board and getting to know the PRISMS community in the coming years.

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Rebecca Foster, PhD
Professional Advisory Board

St. Louis Children’s Hospital, Department of Psychology, St. Louis, MO
Rebecca Foster is a licensed pediatric psychologist at St. Louis Children’s Hospital/Washington University School of Medicine in St. Louis, MO. Dr. Foster’s clinical, research, and teaching efforts emphasize the promotion of psychosocial well-being and quality of life among medically complex pediatric populations and examining family/sibling adaptation and caregiver well-being within the context of chronic illness and/or neurodevelopmental disorders. Recent work in SMS has focused on identifying and meeting caregiver/parent and typically-developing sibling psychosocial needs, with a concentration on benefit finding and adaptive coping across the lifespan.

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Santhosh Girirajan, MBBS, PhD
Professional Advisory Board

Pennsylvania State University, Department of Biochemistry & Molecular Biology
Santhosh Girirajan, MBBS, PhD, is an Associate Professor of Genetics in the Department of Biochemistry and Molecular Biology and Anthropology at Penn State. A physician by training, Dr. Girirajan obtained his medical degree from Bangalore University and a PhD in human genetics from the Medical College of Virginia, Virginia Commonwealth University, Richmond, Virginia. During his graduate studies in the lab of Dr. Sarah Elsea, Dr. Girirajan performed human genetics research to identify and characterize genes responsible for Smith-Magenis syndrome. He performed postdoctoral training in the lab of Dr. Evan Eichler in the Department of Genome Sciences at the University of Washington, studying the mechanisms and consequences of large genomic changes with particular relevance to human neurodevelopmental disorders. Dr. Girirajan joined Penn State as a faculty member in the summer of 2012. The primary focus of his current research is to understand the clinical and genetic heterogeneity of neurodevelopmental disorders with a specific focus on autism.

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Rachel Franciskovich, MS, CGC
Professional Advisory Board

Rachel Franciskovich is a board certified genetic counselor in the department of Molecular and Human Genetics at Baylor College of Medicine. She is involved in the care of individuals and families in the general genetics outpatient clinic at Texas Children’s Hospital, primarily in The Woodlands. Additionally, she assists with the management and care of individuals in the Smith-Magenis Syndrome specialty clinic. Primary clinical duties include: clinical evaluations, genetic testing coordination and selection, disclosure of results and information, and management of clinic flow and coordination.

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Amy Pereira
Member at Large

Amy began her work with PRISMS in 2012 when she joined the Conference Planning Committee. She is currently serving on the Conference Planning Committee and Educational Committee. Amy lives in Idaho and is married to Brian. They have two children together, Kaitlyn and Joey. Joey was diagnosed in 2009 with Smith-Magenis Syndrome at 18 months old. Amy works for the University of California, Davis as an Executive Analyst in the Provost’s Office and enjoys traveling and spending time with family and friends.

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John Berens, MD, FAAP, FACP