PRISMS - The Team

Margaret Miller
Vice President

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 on the syndrome. She has served on the PRISMS Board as President, Past-President, Vice President, (currently), and Board Member and has helped to chair and plan ten international conferences and nine research symposiums. She has been an invited speaker on SMS at educational conferences, college seminars, and the National Institutes of Health. Maggie is passionate about working closely with researchers and professionals and industry leaders and believes that we can only make greater strides in our mission when we work together. Maggie lives in a suburb of Washington DC, with her husband and daughter.

Connect with Margaret

Lynda Kilian
Staff

Lynda works part-time for PRISMS and is primarily responsible for managing all donations received. Lynda brings over 40 years of professional experience in a wide array of areas, including administrative, financial, publications, human resources, and creative. Her latest endeavor was owner/operator of a successful event decor rental and decorating business. Lynda lives in the Minneapolis area with her husband as empty nesters and has two adult daughters. She recently became a grandmother and loves spending time with her grandson whenever possible. She enjoys her time with family and friends and likes to cook, entertain, read, golf and travel.

Connect with Lynda

Michelle Larscheid
Staff

Michelle is the Event and Community Engagement Manager for PRISMS. She previously served part-time as Program Assistant and then as Program Coordinator. In this new role, Michelle will work closely with the Executive Director and PRISMS Board of Directors to build programs, host events, and strengthen the SMS community. Michelle has 30 years of marketing, public relations, and event planning experience. Michelle is a native of Minnesota and recently moved with her family to Raleigh, NC, where she lives with her husband and three children. In her spare time, she enjoys thrift shopping, walking with her dog, volunteering, traveling, and spending time with family and friends.

Connect with Michelle

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.

Connect with Jason

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.

Connect with Michelle

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. (PAB term: 2021-2023)

Connect with Rachel

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. (PAB term: 2021-2023)

Connect with Nancy

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.(PAB term: 2020-2022)

Connect with Rebecca

Jane Charles, MD
Professional Advisory Board

Medical University of South Carolina, Charleston, SC
Dr. Jane Charles is a Developmental-Behavioral Pediatrician in the Departmentof Pediatrics, Division of Developmental-Behavioral Pediatrics at the Medical University of South Carolina in Charleston, SC. Dr. Charles is an active clinician, researcher, and educator. Her areas of specialization are in the fields of Autism Spectrum Disorders (ASD), intellectual disabilities, and genetic disorders. She provides developmental follow up and medication management for comorbid behavioral disorders for children into adulthood. Dr. Charles has received research funding as the principal investigator, or co-Investigator for a variety of grants exploring issues related to developmental disabilities including investigating the prevalence of ASD and Fragile X as part of the CDC’s Autism and Developmental Disabilities Monitoring Network. (PAB term: 2020-2022)

Connect with Jane

Christine Brennan, PhD CCC-SLP
Professional Advisory Board

University of Colorado, Boulder, CO
Christine Brennan, PhD CCC-SLP, is an assistant professor at the University of Colorado, Boulder. She is a developmental cognitive neuroscientist and speech-language pathologist. Dr. Brennan is the director of the ANCAR Lab (Applied Neuroscience for Communication and Reading) at the University of Colorado, Boulder. As a speech-language pathologist, Dr. Brennan has worked with several children with SMS. Recently, Dr. Brennan has begun to design and present PRISMS conference talks specifically at adolescents and adults with SMS. While Dr. Brennan currently resides in Boulder, CO, she continues to own a private practice in Illinois, which continues to provide treatment services to children with SMS. Dr. Brennan currently teaches undergraduate and graduate courses in the department of Speech, Language, and Hearing Sciences at the University of Colorado, Boulder. She earned her BA from Southern Connecticut State University and her PhD and MA from Northwestern University.(PAB term: 2021-2023)

Connect with Christine

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. (PAB term: 2020-2022)

Connect with Santhosh

Andrea Gropman, MD
Professional Advisory Board/em>

Children’s National Medical Center, Washington, DC
Andrea Gropman is a child neurologist and clinical and biochemical geneticist at the Children’s National Medical Center in Washington, DC, where she is Chief of Developmental Disabilities and Neurogenetics. She is also Principal Investigator, at Children’s Research Institute Center for Neuroscience Research (CNR). Dr. Gropman is Principle investigator for the Urea cycle rare disorders consortium. Dr. Gropman specializes in neurogenetics, with a focus on mitochondrial disorders, Urea cycle disorders, XY chromosome aneuploidies and Smith-Magenis Syndrome. (PAB term: 2022-2024)

Connect with Andrea

Barbara Haas-Givler, MEd, BCBA
Professional Advisory Board

Geisinger’s Autism & Developmental Medicine Institute, Lewisburg, PA
Barbara Haas-Givler is a board certified behavior analyst and Director of Education & Behavioral Outreach at Geisinger’s Autism and Developmental Medicine Institute 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. (PAB term: 2022-2024)

Connect with Barbara

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. Check out Shane: up at night with SMS (PAB term: 2021-2023)

Connect with Kerry

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. (PAB term: 2020-2022)

Connect with Ann

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. (PAB term: 2022-2024)

Connect with Sarah

Jackie Fallenstein
Member at Large

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.

Connect with Jackie

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 2020 Conference Planning Committee, Awareness Committee and Educational Committee. Amy lives in California 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.

Connect with Amy

Brandon Daniel
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, effective Jan 1, 2019. Brandon is the revenue administration manager for Ag-Power, Inc. Brandon also serves as Chairman of his town’s planning and zoning commission and as President of the Eagle Tennis Foundation booster club. He and his wife, Dawnda, live in Prosper, TX, a suburb of Dallas. They have three boys, ages 17, 15, and 8. Their fifteen-year-old son Coulter, was diagnosed with SMS in 2007.

Connect with Brandon

Diane Erth
Secretary

Diane lives in San Diego, CA with her husband, Joe, and their son, Max. She is a Stay at Home Mom but feels she deserves a more elaborate title as she finds herself wearing many hats and often several at the same time. Diane enjoys taking Max on new adventures around the globe. Visiting Disney parks and going on Disney cruises are favorites for the whole family. Max was diagnosed with Smith-Magenis Syndrome at just 30 days old. Diane and Joe did a lot of research online and found PRISMS. When they reached out to the then Prisms President, they were able to ask questions and felt it was good to talk to another parent about their concerns. Diane has made it a personal goal to welcome and offer support to all SMS families and to be available to answer questions and help the newly diagnosed families. Diane has served in various positions on the Prisms Board since 2017.

Connect with Diane

Percy Huston
Treasurer

Percy joined the PRISMS board in 2006, initially to spearhead fundraising efforts. As an at-large member, he has since served on the finance committee and strategic planning committee. In 2014, he was asked to initiate the regional representative program and coordinate volunteer efforts from those in the PRISMS community. Percy’s current position is serving as Treasurer. Percy is involved in family banking in Missouri and also represents central payment in the credit card processing industry. He and his wife, Bernadette, live in Cape Girardeau, MO. They are the parents of Jacqueline, a 26-year old daughter with SMS, and a 24-year-old son, J.P. who recently graduated from the University of Missouri and now resides in Nashville and is employed by Sun Trust Bank. They also have two older sons, Shawn, 42, and Billy, 39, and 6 grandchildren.

Connect with Percy

Robert M. Miller, Advisor on Clinic Relations

Robert Miller has been working for almost five decades with families who have a child or children with special needs. He has also worked with the professionals who work with those children and families. He is particularly interested in how families learn about, access and receive meaningful information and services from competent professionals, organizations and institutions. His interests led to his co-founding the Fragile X Clinical & Research Consortium and the AXYS Clinic & Research Consortium. Robert has been assisting PRISMS since 2015 with a number of efforts including strategic planning and staff recruitment.

Connect with Robert

Casey Gorman
Executive Director

Casey came to PRISMS in 2019 after receiving her Master’s in Public Administration (MPA) with a focus on Nonprofit Management from Villanova University. While obtaining her MPA, Casey worked at the Children’s Hospital of Philadelphia as a Research Coordinator, most recently working within the Division of Neurology with a focus on epilepsy and Rett Syndrome. As the study coordinator for Rett Syndrome, Casey worked with patient advocacy groups, academic groups, and pharmaceutical companies to create and execute research projects that help to improve the understanding of Rett Syndrome and explore potential treatments for the symptoms of Rett Syndrome. “As the Executive Director of PRISMS, I will bring my knowledge of academic research and public administration to the organization to support the patients and families affected by Smith-Magenis Syndrome, particularly in the expansion of potential research collaborations. I believe my experience in advancing research in Rett Syndrome will be of great benefit to the Smith-Magenis Syndrome community.” Casey has also been an active volunteer in the Philadelphia Area Disc Alliance, which is a membership-based sports nonprofit. In her free time Casey is an active participant in competitive ultimate frisbee, traveling to tournaments across the country.

Connect with Casey

Robert M. Miller
Advisor on Clinic Relations

I have been working, for almost five decades, with families who have a child or children with special needs, along with the professionals who work with those children and families. I am particularly interested in how families learn about, access and receive meaningful information and services from competent professionals, organizations and institutions. My interests led to my co-founding the Fragile X Clinical & Research Consortium and the AXYS Clinic & Research Consortium. I have been assisting PRISMS since 2015 with a number of efforts including strategic planning and staff recruitment.

Connect with Robert

Randy Beall
Immediate Past President

Randy joined the PRISMS Board in 2001. He was the treasurer and vice president before serving 10 years as president, beginning in 2005. He currently serves as immediate past president and is on the executive committee, nominating committee and finance committee. Randy works professionally in banking. He and his wife, Mary, live in Garland, TX (a Dallas suburb). They are the parents of two adult daughters, Laura (who has SMS) and Jenny.

Connect with Randy

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.

Connect with Denien

Emily Fields
Staff

Emily joined PRISMS as the organization’s first Executive Director in January 2015. A graduate with a B.A. in Human Services from The George Washington University, Emily has a background in nonprofit management, development, and community engagement. Prior to her work with PRISMS, Emily served in the Development Office at the National Organization for Rare Diseases, supporting rare patient organizations like PRISMS. Emily is passionate about her work with PRISMS and SMS families and is looking forward to PRISMS 2018 International Conference where she can continue to build relationships with the community. Emily currently resides in Raleigh, NC where she enjoys spending time with family, trying her hand at new recipes, and seeing live shows around town.

Connect with Emily

Julie Bernatz
Staff

Julie is PRISMS Executive Assistant. In this role, she supports the Executive Director and PRISMS Board of Directors in a variety of tasks including member engagement, program planning, and administrative activities. Julie’s background includes working in the travel industry as a Travel Agent, Supervisor and Account Director. After having her second child, she changed directions and became a preschool teacher and continued that for 10 years. Julie is a self-motivated, positive and an organized individual. As a result, she started her own organization business. In her free time, she enjoys any live music, Jazzercise, a good book, vacationing with her family and many outdoor adventures.

Connect with Julie

Allison Stephanouk
Education Committee

Allison is the newest member of the PRISMS Board of Directors. She is joining the Board in the new role of Education Chair, where she will be working to establish new platforms to bring educational information and resources about Smith-Magenis Syndrome to the community. Allison began her work with PRISMS in 2017 when she joined the Conference Planning Committee. She is currently serving on the 2020 Conference Planning Committee and is the Regional Representative for the state of Georgia. Allison is married to Alex Stephanouk and lives in Columbus, Georgia. She and her husband Alex have 3 children, William 14, Catherine 12, and Natalie 8. Natalie was diagnosed with Smith-Magenis Syndrome shortly after birth.

Connect with Allison

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.

Connect with Theresa

The Team

Led by Parents and Professionals

Executive Director

Casey Gorman Executive Director

Board of Directors

Brandon Daniel President

Margaret Miller Vice President

Percy Huston Treasurer

Diane Erth Secretary

Denien Rasmussen Regional Representative Committee

Allison Stephanouk Education Committee

Michelle Lee Awareness Committee

Amy Pereira Member at Large

Jackie Fallenstein Member at Large

Jason Michaud Member At Large

Professional Advisory Board

Sarah Elsea, PhD Professional Advisory Board Chair

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

Barbara Haas-Givler, MEd, BCBA Professional Advisory Board

Kerry Boyd, MD, FRCPC Professional Advisory Board

Andrea Gropman, MD Professional Advisory Board

Christine Brennan, PhD CCC-SLP Professional Advisory Board

Nancy Raitano Lee, PhD Professional Advisory Board

Rebecca Foster, PhD Professional Advisory Board

Santhosh Girirajan, MBBS, PhD Professional Advisory Board

Rachel Franciskovich, MS,CGC Professional Advisory Board

Staff

Michelle Larscheid Event & Community Engagement Manager

Robert M. Miller Advisor on Clinic Relations

Lynda Kilian Administrative Assistant

Theresa Wilson, MS, RD Research Coordinator

Casey Gorman
Executive Director

Brandon Daniel
President

Margaret Miller
Vice President

Percy Huston
Treasurer

Diane Erth
Secretary

Denien Rasmussen
Regional Representative Committee

Allison Stephanouk
Education Committee

Michelle Lee
Awareness Committee

Amy Pereira
Member at Large

Jackie Fallenstein
Member at Large

Jason Michaud
Member At Large

Sarah Elsea, PhD
Professional Advisory Board Chair

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

Barbara Haas-Givler, MEd, BCBA
Professional Advisory Board

Kerry Boyd, MD, FRCPC
Professional Advisory Board

Andrea Gropman, MD
Professional Advisory Board

Christine Brennan, PhD CCC-SLP
Professional Advisory Board

Nancy Raitano Lee, PhD
Professional Advisory Board

Rebecca Foster, PhD
Professional Advisory Board

Santhosh Girirajan, MBBS, PhD
Professional Advisory Board

Rachel Franciskovich, MS,CGC
Professional Advisory Board

Michelle Larscheid
Event & Community Engagement Manager

Robert M. Miller
Advisor on Clinic Relations

Lynda Kilian
Administrative Assistant

Theresa Wilson, MS, RD
Research Coordinator