PRISMS - The Team

NDD SYNGAP1 RAI1 Fragile X _ Caregiver Phase 1_infoletterV5_7.17.23

Michelle Larscheid
Interim Executive Director

Michelle Larscheid has been with PRISMS for four years, most recently serving as Events and Community Engagement Manager. Michelle has been involved in all aspects of PRISMS’ programming, ensuring they support the organization’s mission, vision, and values. If you attended the 2022 conference in Dallas, you likely witnessed Michelle’s great energy and enthusiasm as she expertly led the conference team in putting on an exceptional event.

Michelle has a B.S. in Journalism and Mass Communications from Iowa State University. She has spent three decades working in public relations, marketing, sales promotion, and event planning in diverse industries including financial services, publishing, and entertainment. Before joining PRISMS, Michelle co-created and operated a successful event rental 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 creating awareness for Smith-Magenis syndrome. I look forward to even more engagement with the PRISMS community in this interim role.”

Michelle is a native of Minnesota and recently moved to Raleigh, NC, where she lives with her family. Her hobbies include traveling, golfing, watching live music, walking her dog, and spending time with her family and friends.

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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.

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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.

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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.

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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.

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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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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.

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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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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.

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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.

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Eric Rogers
Member at Large

Eric and his wife Jessica live in Mount Juliet, TN with their son Wyatt (9) who has SMS, and daughter Adelyn (5). Eric attended Cumberland University, receiving a bachelor’s degree in accounting and a Master’s degree in Business Administration.

He has worked as an Internal Auditor for over 8 years and has auditing experience with banks, small non-profits, schools, and other financial services firms. He has been with Deloitte for 7 years, starting with their Internal Controls Group before transitioning to Internal Audit. In his position, he conducts various finance and operational audits for the Firm.

Eric’s involvement with PRISMS includes attending conferences and assisting with sessions at the conference. Eric says he wanted to be involved with the PRISMS Board to have the opportunity to be a part of something bigger than just a parent of a SMSer. Being a part of the board will allow him to give back to the SMS families and provide an outlet for them to learn, connect, and find a safe place among friends. Eric loves to run, cycle, and compete in triathlons in his free time. He also enjoys spending time with his family by the pool and grilling.

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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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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)

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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. (PAB term: 2020-2022)

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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)

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

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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)

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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)

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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. (PAB term: 2021-2023)

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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.(PAB term: 2020-2022)

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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. (PAB term: 2020-2022)

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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. (PAB term: 2021-2023)

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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.

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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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The Team

Led by Parents and Professionals

Executive Director- Interim

Michelle Larscheid Interim 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

Eric Rogers 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

Lynda Kilian Administrative Assistant

Theresa Wilson, MS, RD Research Coordinator