PMSF Family Conference
Speaker Biographies
CARE & CURE SPEAKER BIOS
Elizabeth Berry-Kravis, MD, PhD Professor, Departments of Pediatrics, Neurological Sciences, Anatomy and Cell Biology Director, RUSH Pediatric Neurosciences F.A.S.T. Center for Translational Research Rush University Medical Center
Dr. Berry-Kravis is a renowned researcher and pediatric neurologist who has dedicated her career to studying rare genetic disorders and improving the lives of individuals with these conditions. She is a Professor of Pediatrics, Neurological Sciences, and Anatomy/Cell Biology at the Rush University Medical Center in Chicago, and has established herself as a leader in the field of translational research in rare genetic disorders, including Phelan-McDermid syndrome. Dr. Berry-Kravis has been actively engaged in research on Phelan-McDermid syndrome. Her work has focused on developing outcome measures and biomarkers, natural history studies, and clinical trials of new targeted treatments. Dr. Berry-Kravis has received numerous awards and honors for her contributions to the field of medicine. She is an active member of the Phelan-McDermid syndrome Natural History Study and PMSF’s Medical Advisory Committee.
Alex Kolevzon, MD, Clinical Director, Seaver Autism Center for Research and Treatment Director of Child and Adolescent Psychiatry, Icahn School of Medicine at Mount Sinai
Dr. Alex Kolevzon is a child and adolescent psychiatrist and Professor of Psychiatry and Pediatrics at the Icahn School of Medicine at Mount Sinai. He serves as the Director of Child and Adolescent Psychiatry for the Mount Sinai Health System and the Clinical Director of the Seaver Autism Center for Research and Treatment at Mount Sinai. His research interests pertain to understanding the neurobiology of autism and related neurodevelopmental disorders, biomarker discovery, and developing novel therapeutics. Most recently, his group has focused on studying specific genetic forms of autism, including Phelan-McDermid syndrome, to explore targets for pharmacological intervention.
Dr. Kolevzon is a leader of the Phelan-McDermid syndrome network for the Developmental Synaptopathies Consortium as part of the Rare Disease Clinical Research Network funded by the NIH. This is a long-standing productive Natural History Study. He is also the Chair of the PMSF Medical Advisory Committee, a leader of the Phelan-McDermid syndrome clinical consensus guidelines, the PI of multiple clinical trials in Phelan-McDermid syndrome, a member of the Neuropsychiatric Consult Group, and a mentor to the past PMSF-funded investigators. Dr. Kolevzon also leads the Experimental Therapeutics Program at the Seaver Autism Center which conducts studies that range from small pilot trials to multi-centered pivotal FDA studies.
William E. Bennett, MD, MS, Associate Professor of Pediatrics, Pediatric Gastroenterology, Hepatology, and Nutrition , Scientific Director, Indiana CTSI Patient Engagement Core, Adjunct Associate Professor of Urology, Indiana University School of Medicine
Dr. Bennett is a pediatric gastroenterologist, clinical informatician, decision scientist, and computer scientist at Indiana University School of Medicine. His daughter, Cecilia, has Phelan-McDermid syndrome, which has driven an interest in developing programs that meet the subspecialty needs of children with complex developmental gastrointestinal problems. He has board certifications in pediatrics, gastroenterology, and clinical informatics. His research focuses on using health information technology to improve providers’ adherence to evidence based medicine, automated screening for anxiety and depression in subspecialties, and understanding patient and family preferences related to the use of immunosuppression. Dr. Bennett also specializes in the analysis of very large clinical data sets using cutting edge computational methods to analyze practice patterns, minimize costs, and track patient outcomes. He has a clinical interest in family-centered care and the complex needs of families with special needs children. He is a member of PMSF’s Medical Advisory Committee and has been active in contributing to the Phelan-McDermid syndrome clinical consensus guidelines, among other medical and scientific initiatives. He is a leader of the NIH-funded R13 Consortium focused on GI disorders in people with neurodevelopmental conditions, CANDID.
Guoping Feng, PhD, Poitras Professor of Neuroscience; Associate Director, McGovern Institute for Brain Research; Director, Hock E. Tan and K. Lisa Yang Center for Autism Research; Department of Brain and Cognitive Sciences; Massachusetts Institute of Technology; Director of Model Systems and Neurobiology; Stanley Center for Psychiatric Research; Institute Member; Broad Institute of MIT and Harvard
Dr. Feng is the Poitras Professor of Neuroscience in the McGovern Institute for Brain Research and Director of Hock E. Tan and K. Lisa Yang Center for Autism Research at the Massachusetts Institute of Technology (MIT). He also directs model systems and neurobiology in Stanley Center for Psychiatric Research at the Broad Institute of MIT and Harvard. Dr. Feng’s research is devoted to understanding the development and function of synapses in the brain (the place where neurons communicate). He also studies the dysfunction of synapses in disease, with a special focus on neurodevelopmental and psychiatric disorders. Dr. Feng has done foundational work studying SHANK3 – an important synapse gene which is highly connected with PMS and autism. He has generated animal models which harbor genetic alterations to SHANK3 and allow models of PMS to be widely studied in laboratories. He is also involved in developing technology and overseeing projects surrounding SHANK3 gene therapy.
Xian Gao, PhD, Director of Translational Research at Emugen Therapeutics; MIT Research Affiliate
At Emugen, Dr. Gao is leading strategy development for the advancement of internal research pipeline from basic science to clinical studies. Before joining Emugen, Dr. Gao completed a postdoctoral research fellowship at the McGovern Institute for Brain Research, Department of Brain and Cognitive Sciences at MIT where she developed genetically engineered mouse models relevant for psychiatric disease and pioneered novel gene therapy approaches in both rodent and non-human primate disease models.
Hala Harony-Nicolas, PhD, Associate Professor; Director of the Summer Undergraduate Research Program for Underserved Scholars (SURP4US); The Department of Psychiatry, The Department of Neuroscience Seaver Autism Center; Friedman Brain Institute Scholar; Icahn School of Medicine at Mount Sinai
Dr. Harony-Nicolas is an Associate Professor of Psychiatry and Neuroscience at the Icahn School of Medicine at Mount Sinai, affiliated with the Seaver Autism Center, the Friedman Brain Institute, and the Mindich Child Health and Development Institute. She earned her PhD in Molecular Biology from the Technion Institute in Israel and completed postdoctoral training in Molecular Neurobiology at the University of Haifa. During this time, she chose to focus on autism and neurodevelopmental disorders, which led her to join Dr. Joseph Buxbaum’s lab at Mount Sinai for further postdoctoral training. Since becoming an Assistant Professor in 2017, her lab has been studying brain circuits of social behavior and the impact of autism-associated mutations using transgenic rodent models, including the first Shank3-deficient rat model of neurodevelopmental disorders and autism spectrum disorders. Her research employs behavioral and molecular neuroscience techniques, fiber photometry, and advanced chemogenetic and optogenetic tools to identify molecular and cellular targets for treatment and explore altered brain circuits for potential non-invasive interventions.
Jimmy L. Holder, Jr. MD, PhD, Co-Chair BCM Medical School Admissions Committee, Joan and Stanford Alexander Chair for Neuropsychiatric Genetics, Associate Professor of Pediatrics and Neurology Texas Children’s Hospital and Baylor College of Medicine
Dr. Holder is a Child Neurologist at Baylor College of Medicine and Texas Children’s Hospital. He is a graduate of Johns Hopkins University and obtained his MD and PhD in human genetics at the University of Texas Southwestern Medical Center. He completed a fellowship in Neurogenetics at the University of California San Francisco. He then returned to Texas to complete his residency in Pediatrics and fellowship in Child Neurology at Baylor College of Medicine. He is director of the Shankopathy clinic at the Blue Bird Circle Clinic for Pediatric Neurology where he currently cares for over 60 children and adults with Phelan-McDermid syndrome. He is a respected expert on seizures and epilepsy in Phelan-McDermid syndrome and other disorders. He is also a principal investigator at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital where he investigates the neurobiological and molecular basis of Phelan-McDermid syndrome.
Teresa M. Kohlenberg, MD, Assistant Professor, University of Massachusetts Medical School
Member, Phelan-McDermid Syndrome Neuropsychiatric Consultation Group (ECHO)
Dr. Kohlenberg (“Tesi”) is a board-certified pediatrician who also completed training in Developmental Pediatrics and in Child and Adolescent Psychiatry. For the past two decades, she has worked in child psychiatry and is an Assistant Professor in Psychiatry at the University of Massachusetts Medical School. Dr. Kohlenberg is also the mother of an adult daughter who was diagnosed with a SHANK3 variant at age 16, two years after she developed complex neuropsychiatric illness. Dr. Kohlenberg has published research on psychiatric illness and regression in people with Phelan-McDermid syndrome and played a leadership role in the development of the Phelan-McDermid Syndrome Neuropsychiatric Consultation Group, which provides consultation to doctors around the world caring for people with Phelan-McDermid syndrome with puzzling psychiatric illness. She is also a member of the PMSF Medical Advisory Committee, and she consults to families as they navigate neuropsychiatric illness. She is highly motivated to understand what triggers neuropsychiatric episodes and regression in Phelan-McDermid syndrome patients, and what interventions might prevent or relieve those episodes.
Tess Levy, CGC, Assistant Professor of Psychiatry, Clinical Trials Manager, Icahn School of Medicine at Mount Sinai
Tess Levy is an Assistant Professor of Psychiatry and Clinical Trials Manager at the Seaver Autism Center at the Icahn School of Medicine at Mount Sinai. She completed her undergraduate degree at McGill University in Montreal, Quebec as well as her Masters degree in Genetic Counseling. She is currently working on her PhD in Clinical Research at the Icahn School of Medicine. Tess studies rare genetic disorders associated with neurodevelopment, including Phelan-McDermid syndrome. She is specifically interested in how variations in genotypes can relate to clinical features.
Ann Neumeyer, MD, Medical Director and Child Neurologist, MGH Lurie Family Endowed Chair in Autism; Associate Professor of Neurology, Lurie Center for Autism, Massachusetts General Hospital; Harvard Medical School
Dr. Ann Neumeyer, Medical Director of the Lurie Center for Autism, MGH Lurie Family Endowed Chair in Autism and Associate Professor of Neurology at Harvard Medical School, is a child neurologist with over 30 years of experience diagnosing and caring for children with autism spectrum disorder (ASD) and other neurodevelopmental disorders.
As Medical Director, Dr. Neumeyer develops and directs initiatives to enhance and expand the clinical services of the Lurie Center for individuals with ASD across the lifespan. She is co-founder and co-director of the first Phelan-McDermid clinic at the Lurie Center.
Dr. Neumeyer focuses on improving the lives of patients with ASD and their families far beyond the Lurie Center. Her research focuses on conditions associated with autism such as sleep and decreased bone density. She coordinates autism related care programs with other clinical and research programs throughout Massachusetts General Hospital. Outside the hospital, Dr. Neumeyer’s leadership role as an advocate for patients with ASD and their families has been recognized through her appointment to the Massachusetts Governor’s Autism Council. She is an active member of PMSF’s. Medical Advisory Committee.
Antonio M. Persico, MD, Full Prof. in Child & Adolescent Neuropsychiatry, Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia
Antonio M. Persico is full Professor of Child and Adolescent Psychiatry at the University of Modena and Reggio Emilia in Italy. He earned his Medical Degree in 1986 at the Catholic University of the Sacred Heart in Rome (Italy), where he completed his residency program in Psychiatry in 1990. During the first part of his career, he worked on addiction genetics, on brain plasticity to repeated psychostimulant exposure, and on the trophic roles of serotonin in the development of the somatosensory system. Starting in 1998, his main research interest shifted toward autism spectrum disorder (ASD). Among his achievements, in 2001 the primary report involving the Reelin gene in ASD (Mol. Psychiatry, 6:150-159); also in 2001 the first indication that SSRI antidepressants may have ASD-promoting teratogenic effects, derived from observing mild neurodevelopmental abnormalities in 5-HT transporter hz knockout mice (J. Neurosci., 21:6862-6873); and in 2011 the primary report of elevated urinary p-cresol in ASD (Biomarkers, 16:252-260) which has become a useful paradigm to study gene x environment interactions in ASD.
In 2006 he was among the co-authors who received the Cozzarelli Prize from the National Academy of Sciences of the U.S.A., for the article “A genetic variant that disrupts MET transcription is associated with autism” spearheaded by Pat Levitt and published in the Proc. Natl. Acad. Sci. U.S.A. (103:16834-9, 2006). On May 16, 2024, he has been awarded with the INSAR Fellowship by the International Society for Autism Research. Since 2010, through his clinical work at University “Campus Bio-Medico” in Rome (Italy), then at the University of Messina, and now at the University of Modena and Reggio-Emilia he has created new programs for Child & Adolescent Psychiatry with a special focus on ASD and, starting in 2014, also on Phelan-McDermid Syndrome. His research interest is mainly translational, with a focus on the identification of biomarkers for the early diagnosis of ASD and personalized medicine, as well as the development of novel evidence-based pharmacological interventions for ASD and for Phelan-McDermid Syndrome.
Michael Schön, MD, Institute for Anatomy and Cell Biology, Ulm University
Dr. Schön is a Research Work Group Leader at the Institute for Anatomy and Cell Biology at Ulm University, Germany. Dr. Schön has broad expertise in neuroscience (synapse biology, Alzheimer’s Disease, autism, and phylogeny of human brain structures). He is a board member of the German Phelan-McDermid family organization, a member of the Ulm Phelan-McDermid Expert Center for clinical care and research, a PMSF Medical Advisory Committee member, a consortium member for the European Guidelines on Phelan-McDermid syndrome and he has conducted research with patients and animal models of Phelan-McDermid syndrome. He also is chairman of the European Phelan-McDermid Syndrome Research Consortium.
Sid Srivastava, MD, Assistant Professor of Neurology, Harvard Medical School, Boston Children’s Hospital
Dr. Siddharth Srivastava is a child neurologist and neurodevelopmental disorder specialist studying genetic causes of intellectual disability and cerebral palsy, with particular emphasis on synaptopathies, including Phelan-McDermid syndrome. He uses a multi-modal approach involving gene/variant discovery, neurodevelopmental phenotyping, and biomarker identification. This approach not only pinpoints possible mechanisms of disease but also delineates appropriate targets for therapy in clinical trials aimed at improving developmental outcomes. He hopes to improve the lives of children with neurogenetic and neurodevelopmental disorders by translating scientific discoveries into personalized treatments and meaningful clinical practice changes. He has an active role in the Phelan-McDermid syndrome Natural History Study, clinical consensus guidelines, and Neuropsychiatric Consult Group.
Audrey Thurm, PhD, Director, Neurodevelopmental and Behavioral Phenotyping Service, Intramural Research Program, National Institutes of Mental Health
Dr. Audrey Thurm received training at DePaul University and Boston Children’s Hospital/Harvard Medical School, and conducted a post-doctoral fellowship at Johns Hopkins School of Medicine. She has been at NIMH since 2002, serving in the extramural program until 2006, as chief of both the Autism and Social Behavior Program, and the Compulsive Repetitive Behaviors Program. In 2006 she moved to the intramural program to help launch the autism research program. She has expertise in longitudinal studies and an interest in markers of the early diagnosis of autism as well as genetic conditions associated with neurodevelopmental disorders. A primary goal of her research is to improve instrumentation to allow for more finely-tuned developmental assessments that distinguish various phenotype-genotype relationships and serve as useful treatment outcome measures. She has been a long-term advocate in Phelan-McDermid syndrome, as PMSF’s Scientific Advisory Committee member, has a leadership role in the Phelan-McDermid syndrome Natural History Study, serves as an advisor for collaborative efforts such as the Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA), sits on the Neuropsychiatric Consult Group, and has helped adapt and test assessments for Phelan-McDermid syndrome.
Liza Squires, MD, Chief Medical Officer, Neuren Pharmaceuticals
Dr. Liza Squires’ career has focused on the development of novel therapeutics for diseases of the Central Nervous System that affect children. She began her career in academic, hospital-based child neurology where the unmet need for therapeutic options drew her to a career in drug development. Over the past 20 years, Dr. Squires has held positions of increasing responsibilities in both early and late- stage development at companies including Johnson and Johnson, Shire Pharmaceuticals, Lumos Pharma, Origin Biosciences. Currently, she is the Chief Medical Officer at Neuren Pharmaceuticals. She has led and contributed to multiple NDAs and sNDAs resulting in global regulatory approvals. She received her B.S. from the University of Michigan and M.D. from Michigan State University. Liza trained in general pediatrics at Yale University and did her residency in Child Neurology at Massachusetts General Hospital and is board certified in General Pediatrics and Neurology with Special Competence in Child Neurology.
Daniel Gallo, PhD, Head of Medical Affairs at Jaguar Gene Therapy
Dan Gallo joined Jaguar Gene Therapy in January of 2022, where he leads clinical development strategy and medical affairs. During his tenure with Jaguar, Dan has worked closely with academic partners, advocates and collaborators including PMSF, the developmental synaptopathies
CONNECT SPEAKER BIOS
Lynda Lahti Anderson, PhD, MPH, Research Associate
Lynda Anderson has provided direct support to adults and children with disabilities in community-based settings and has worked as a county case manager and as a school parent liaison. Her current work includes research and training related to family supports, the direct support workforce, and supporting community employment. She is the parent of a neurodivergent son (Tourette’s Syndrome) and learned first hand how the ability to advocate and set expectations can make a difference for someone’s life path.
Brandon Barnett, Senior Director of Strategy, Office of the CTO, Intel Corporation
Brandon Barnett is the father of triplet boys (age 22), Connor, Spencer and Skylar, the latter of whom has Phelan McDermid Syndrome. Brandon has a PhD in Applied Physics and a MBA and leads a strategy team for the Office of the CTO within Intel Corporation. He met his wife Cindy during graduate school; they now live in Beaverton, Oregon with their dog Hawkeye. In the midst of the COVID-19 pandemic, Brandon and Cindy began the process of creating a group home environment for Skylar nearby. Brandon is the co-founder and leader of the global Community of Caregivers of people with disabilities for Intel’s 100K+ employees worldwide, and he is a corporate representative to Disability:IN.
Cindy B. Barnett, LCSW, PMSF REP – Oregon
Cindy Barnett is a mother of triplet boys (age 22), Connor, Spencer and Skylar, the latter of whom has Phelan McDermid Syndrome. Cindy has both a BA in Psychology and a Master’s Degree in Social Work from the University of Michigan. She met her husband Brandon during graduate school; they now live in Beaverton, Oregon with their dog Hawkeye. In the midst of the COVID-19 pandemic, Brandon and Cindy began the process of creating a group home environment for Skylar nearby. After a 2-year journey stabilizing his home, Cindy continues to support Skylar in accessing recreational and social activities in the community. She recently became the PMSF REP for Oregon.
Elizabeth Barry, MA, Assistive Technology Specialist & Coordinator, PACER Center’s Simon Technology Center
Elizabeth is an Assistive Technology Specialist and Coordinator of PACER Center’s Simon Technology Center. She provides consultations, workshops, and in-services on a variety of topics with a focus on augmentative and alternative communication (AAC) for individuals of all ages and tools related to early childhood skills. Elizabeth enjoys working with individuals of all ages to find technology to support their needs at home, school, work, and in the community.
Cathy Bottini – PMS Moms Session
I’m Cathy Bottini. Mom to Christopher. Christopher is now 43, finally diagnosed at 29. We live in New York. I’m a retired Project Manager. The rest of our family includes his dad Joe, his brother Kevin, sister in law Kristen, niece Layla and nephew Jack.
Stacey Brandjord, Ph.D., L.P.
Stacey Brandjord is a licensed psychologist and school psychologist completing her postdoc at the Masonic Institute for the Developing Brain at UMN. Prior to completing her PhD in school psychology from UMN, she worked as a school-based speech-language pathologist. Her research interests focus on the intersection of language and behavior difficulties as well as services and support for individuals who are minimally verbal and their families.
Chardell Buchanan, MA, RDN
Chardell Buchanan, a Registered Dietitian Nutritionist and dedicated parent, specializes in supporting families navigating the challenges of rare diseases, particularly focusing on enhancing the well-being of both children and parents through nutrition. Following her son Ben’s diagnosis with Phelan-McDermid Syndrome, Chardell experienced firsthand the toll it took on her own health while caring for him. Recognizing the crucial need for caregivers to prioritize their own well-being, she applied her expertise in nutrition to optimize both Ben’s health and her own. With a bachelor’s degree in Dietetics from Brigham Young University and a master’s degree in Community Health Education from Brooklyn College, Chardell is equipped with a comprehensive understanding of the role nutrition plays in overall health. She has shared her insights on platforms such as the Rare Mamas Rising and Because We Are Strong podcasts, as well as the Hatching for Health television show, where she discusses the significance of nutrition for families coping with rare diseases.
Michael Cento, Board of Directors, Phelan-McDermid Syndrome Foundation
Mike is a CPA and works in corporate finance at Kymera International, a global specialty materials manufacturer. Mike is a graduate of Stony Brook University and North Carolina State University. Prior to his career in finance, Mike was a middle school math teacher for 6 years in North Carolina. Mike is a member of the PMSF Board of Directors and serves on the finance Board sub-committee, offering expertise in financial reporting and financial management.
Mike is a native of Long Island but currently resides in a suburb of Raleigh, North Carolina with his wife Jen (a co-REP for North Carolina) and two beautiful daughters, Emily (5) and Ella (3). Emily was diagnosed with Phelan-McDermid Syndrome in October 2022.
Amy Clark, MS, CCC-SLP, PI, Director of Clinical Education for the PROMPT Institute
Amy is the Director of Clinical Education for the PROMPT Institute and clinician at Children’s Minnesota with over 25 years of direct clinical practice experience. She has extensive experience working with children with genetic conditions, developmental delays, motor speech disorders, autism, and language disorders in a variety of settings. She is a member of the Apraxia Kids Professional Advisory Council and nationally recognized speaker on subjects related to motor speech disorders, connecting with caregivers, and PROMPT.
Kris Graff – PMS Moms Session, PMSF co-rep for the state of Wisconsin
My name is Kris Graff. I live in Appleton, Wisconsin with my husband Kevin and son Ryan who was diagnosed with PMS back in 2005 when he was 6. He is now 24. Our family also includes daughter Alexandra, son-in- law Josh, and granddaughter Charlotte. I have been a literacy coach and teacher for the past 33 years.
Meredith Koerner, Volunteer Manager
Meredith has been a member of the 4 Paws team since 2017, first as a Puppy Socializer, then as a Volunteer Coordinator. She has been the Manager of the Volunteer Team for a year, overseeing as many as 2,000 volunteers at a time in various parts of the program. Studying and living overseas for many years enhanced her love of connecting with people, which has translated into her goal to inspire volunteering for the mission of 4 Paws. At home, she and her husband support the organization as Guardians for one of the male breeder dogs, and are happy to show off their “Fabulous Flunky”, whom they adopted 4 years ago when he decided to make a career change from Service Dog in Training to best pet dog in the world.
Pamela Kurtz, M.Ed., Co-REP for New Jersey, Phelan-McDermid Syndrome Foundation
Pam is mom to a 22-year-old son with Phelan-McDermid Syndrome, as well as an 11-year old daughter. She is currently a stay-at-home mom and Co-REP for New Jersey. Pam is a former special education teacher. She has a BA in Journalism from University of Maryland and a M.Ed. with dual teaching certifications from Holy Family University.
Chrissy Hood, Governor-appointed member of the Tennessee Council on Developmental Disabilities, Chapter Lead for Changing Spaces Tennessee, PMSF Tennessee Family REP, Connecting the Journey: Special Needs Support Group Founder
Chrissy Hood began her advocacy work when her daughter with Phelan McDermid Syndrome, Alaina (age 21), was in early intervention. She was appointed to the Tennessee Council on Developmental Disabilities by Governor Lee, where she has worked on legislation for adult changing tables and was awarded the 2023 Rural Health Association Advocate of the Year. A Vanderbilt LEND Trainee, Tennessee Partners in Policymaking graduate, and a Volunteer Advocacy Project graduate, Chrissy’s passion for walking with families with disabilities prompted her to start a support group in her area, to become a Parent2Parent Mentor with Family Voices of Tennessee, and the PMSF Tennessee Family REP. Currently Chrissy is working to start an Arc Chapter in Southern Middle Tennessee and with the Rural Disability Resource Network.
Amy O’Donnell – As an Adult Residential Options Panel Speaker, Amy shares her journey making the difficult decision to place her PMS son, Jacob (18 years old) into a Residential Group Home. Amy has been a consistent advocate for her son. Her sensitivity and first-hand knowledge of the challenges and joys of living with Phelan-McDermid syndrome guide her as she helps to provide support programs and resources to our families worldwide. This will be Amy’s third time presenting at a PMSF conference.
Andrea Papageorgiou – PMS Moms Session, PMSF co-rep for New Jersey
My name is Andrea Papageorgiou. I live in Island Heights, New Jersey with my husband Bob and our twin daughters Olivia 15 (PMS diagnosed at age 7) and Ava 15. We live near the beach and have 3 mastiff dogs. I work for American Express, New York for the past 24 years.
Kiley Richards, LISW, Mental Health Specialist, Support Group Facilitator for Caregivers
in the Phelan-McDermid Syndrome Foundation
As a Caregiver Support Group Facilitator, Kiley works to foster a safe space for caregivers
to be vulnerable in expressing the challenges and joys as they gain the needed support
for themselves and each other. Kiley brings a wealth of experience providing
trauma-focused clinical therapy to individuals, couples and families, and groups. She
currently practices as a School Social Worker and Mental Health Professional within the therapeutic classroom setting, working with multiple school districts in Iowa, where she resides. She brings passion and perspective for caregivers as she has acted as her sister’s primary support since her nephew, Daxton, was diagnosed with Phelan-McDermid syndrome when he was 4 months old. While their is no substitute for being a full-time caregiver, this has given her deep insight into the syndrome and everything her sister has carried. Kiley aims to increase connection and compassion between caregivers in the community as well as for their individual self as they move through their journey.
Michael Riley, Mike is an attorney at Dain Torpy, a law firm in Boston specializing in commercial real estate. Mike and his wife Shelby live in Falmouth, Massachusetts with their three children – Bennett, Nolan and Brielle. Bennett was diagnosed with Phelan-McDermid Syndrome in March 2022 and, ever since, Mike and Shelby have been supporters of PMSF and advocates for raising PMS awareness.
Renata Ticha, Senior Researcher
Renáta Tichá, PhD, received her PhD in Special Education at the University of Minnesota in 2008. She has extensive experience in the development, implementation and conducting research on assessments and interventions designed to be used with individuals with intellectual and developmental (IDD), and related disabilities. She has been a principal investigator or co-PI on multiple grants, including randomized control trials with adults with intellectual and developmental disabilities in community residential settings and on a Project of National Significance focused on building capacity in Minnesota for effective transition services for youth with IDD. Dr. Tichá is an adjunct faculty member in Educational Psychology at the University of Minnesota. Her publications cover the topics of inclusion, transition to adulthood, employment as well as social inclusion of youth and adults with disabilities. She is the editor of the Journal of the International Association of Special Education.
Jamie Vande Hey – PMS Moms Session, PMSF co-rep for the state of Wisconsin
My name is Jamie Vande Hey. I live in Kaukauna, Wisconsin with my husband Mike. Our son Colt was diagnosed with PMS back in 2018 when he was 2. He is now 7. Our family also includes Rory, our 4 year old daughter. I have been a teacher for the past 10 years.
Janet M. Wilson, C.S.S., Sr. Grant Program Coordinator-Sooner SUCCESS-OUHSC, Dept. Of Developmental/Behavioral Pediatrics, Parents with Disabilities Resource Navigator/Sooner SUCCESS, Communication Support Specialist/Sooner SUCCESS, Oklahoma Rare Action Network State Ambassador for NORD
As a multi disciplinary trained coordinator in disability concerns, Janet Wilson brings a wealth of knowledge to the table to help families and individuals with disabilities to access resources, navigate programs, and advocate for a better life through the University of Oklahoma’s Sooner SUCCESS program. Adding her own personal experience in her journey raising her daughter Alyssa ( age 35) with Phelan McDermid Syndrome has given her a passion to empower other caregivers with the knowledge to thrive and grow. After graduating from OCCC, she was a state certified long term SpeD substitute for Mustang Public Schools for 10 years before accepting her current position in 2014. Janet lives on a small farm raising goats in Mustang, Oklahoma with her husband of 36 years, Rusty, and their adult PMS daughter Alyssa. She eagerly awaits the June 2025 nuptials of her son Mitchell and her soon to be daughter in law Sabrina.
Laraleigh Windom, LPN, Family Advocate
As an LPN and parent of a child with Phelan McDermid Syndrome, Laraleigh Windom has a unique background that has served her well as she has navigated the challenging maze that is healthcare. She has successfully advocated for her son against the state of Georgia and helped other families achieve similar success. She has spent time with legislators and attended events at the State Capitol in Georgia to advocate for individuals with disabilities. She has worked in pediatrics for most of her nursing career and has supported families in every stage from initial diagnosis to long term planning. She is passionate about advocacy and filling the gaps the current healthcare system creates.
Dana Winrow, PT, CLT-LANA, Physical Therapist, Certified Lymphedema Specialist, Lymphedema Association of North America Certified, Mom of Child with Phelan-McDermid Syndrome
Dana Winrow is a Physical Therapist with over 27 years of experience in North America. She has been a certified Lymphedema Therapist for over 20 years and is a mom to her son, Johnathan (age 21) that has Phelan-McDermid Syndrome. Dana is a graduate of University of Toronto (College of Physical Therapy) and McMaster University (Hns. Biology & Psychology) and worked as a Physical therapist in Ontario and Alberta, Canada, California, Pennsylvania, and now Massachusetts. Dana is always excited to share her extensive clinical expertise combined with her personal knowledge to help provide resources, caregiving advice and support for those experiencing lymphedema and its challenges.