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General Conference

October 25th 26th

 

This two-day event attracts parents, grandparents, caregivers, and professionals. The attendees are skillfully guided through a choice of multiple learning tracks covering an array of topics that can be tailored to their individual preferences. It is a time to build relationships with other families, attend counseling sessions and support groups, meet with top specialists and authorities on PWS, and just have fun. Experts in the field provide attendees with up-to-date information and resources for addressing the very complex needs of supporting and caring for an individual diagnosed with PWS. 

 

Click here to view the General Conference schedule.  Note: Presentation topics are subject to change

Keynote Speaker: Rick Guidotti

 

Rick Guidotti, an award-winning photographer, has spent the past eighteen years collaborating internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral or intellectual difference; his work has been published in newspapers, magazines and journals as diverse as Elle, GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic Monthly and LIFE Magazine.

Rick is the founder and director of Positive Exposure, an innovative arts, education and advocacy organization working with individuals living with genetic difference. Positive Exposure utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights.

The Positive Exposure photographic exhibition premiered at the People’s Genome Celebration, June 2001, at the Smithsonian’s National Museum of Natural History and continues to exhibit in galleries, museums and public arenas internationally. Positive Exposure is the subject of critically acclaimed Kartemquin Film’s ON BEAUTY.

Rick Guidotti's TED Talk

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General Conference 



2019 PWSA (USA) Platinum Convention Sponsor


Gold Convention Sponsors

Hotel Reservations

Click here to make your reservation at the Caribe Royale in Orlando, FL under our PWSA (USA) discounted price or call 1-800-823-8300


Questions?

Contact Jackie Mallow

941-487-6726

jmallow@pwsausa.org

Meet the Speakers


Kristi Rickenbach

Kristi Rickenbach and her husband John ran a non-profit organization for 12 years. This ministry has touched the lives of children in 48 states and 23 countries worldwide. Working with the youth in South Africa has become a yearly trip for the Rickenbachs and has changed the way they view the world. Kristi and John have been married for 30 years and have five amazing children and three beautiful grandbabies. Their youngest child, Justice Faith (15), was diagnosed with PWS (UPD) when she was one month old. Justice is currently in the ninth grade and loves helping other kids that are also dealing with PWS. Three of Kristi’s passions in life are her faith, family, and helping families and children that are affected by Prader-Willi syndrome.  Kristi is the President of the PWSA Minnesota chapter, a parent mentor, and is a board member of PWSA (USA).

Janice Agarwal, PT, CNDT

Janice is a pediatric physical therapist with thirty years of experience treating children birth to 3 years of age. Janice was part of the Boston City Hospital neurodevelopmental evaluation team and the St. Mary’s Hospital for Children early intervention team in New York. She received her certification in Pediatric (NDT) Neuro-developmental Training at the Bobath Center in London, England. She has lectured nationally and internationally on Developmental Interventions and Sensory Integration for hypotonic children and adults with PWS. She also has an extensive background incorporating Sensory Integration (SI) to normalize development and help manage behavioral problems in children and adults with special needs. PWSA (USA) published her book, Therapeutic Interventions for Children with Prader-Willi Syndrome.  Janice is a former nine-year member of the PWSA (USA) Board of Directors.  She is the mother of two boys, Alex age nineteen (PWS), and Sam, age eighteen.  She lives in Indiana where she and her husband David are developing a farm which will vocationally support adults with special needs.

 

Presentation: Muscle, Bone, Balance & Tone

Janice Agarwal, PT, CNDT & Harold J.P. van Bosse, M.D

Some of the important hallmarks of Prader-Willi syndrome are related to musculoskeletal issues, such as developmental delay due to their hypotonia, flat footedness, and scoliosis. We will discuss how these problems present, and what different options are available for treating them, in a tag-team style presentation with a physical therapist recognized as one of the country’s foremost experts on physical development therapy for children with PWS, and a pediatric surgeon with a large patient population of children with PWS. We will touch upon various options for helping children with PWS gain muscle and bone strength and examine strategies for monitoring of spine and hip problems. Focusing on the spinal deformities, we will outline a treatment process, including bracing, spinal casting, expandable spinal implants and spinal fusion. We will also discuss anesthetic and post-operative recovery concerns for children with PWS undergoing surgery. The presentation will be in slide show format, and questions will be answered at the end of the session, time permitting.

Patrice Carroll, LCSW

Patrice Carroll, LCSW, is the director of PWS services for both children and adults at Latham Centers in Massachusetts, USA. Patrice received her MSW from Simmons College, Boston, MA, in 2008. Patrice is the co-chair of the PWSA (USA) Professional Providers Board as well as the United States delegate for the International Prader Willi Syndrome Organisation (IPWSO) and has over 18 years of experience working with children and adults diagnosed with PWS. Patrice is a co-author of the book Living Healthy with Prader-Willi Syndrome.  In addition to her experience with developing person-centered vocational programming for people with PWS, she has specialized in the multi-modal management of skin and rectal picking using intensive, non-contingent, sensory stimulation.

 

Presentation: Building & Maintaining Healthy Relationships

Patrice Carroll, LCSW & Amy McTighe, Ph.D. 

Healthy relationships are a key factor in living a quality life. Disruptions in appropriate social skills, cognitive impairments and challenges in day-to-day living can impact a person’s ability to form and keep relationships. This session will explore strategies to assist individuals in creating and maintaining healthy friendships, romantic relationships and will explore issues related to sexuality.

Emily Felt

Emily Felt is a PWS mom, writer, and home chef working in the field of public health. She’s also a coach and positive psychology practitioner who creates science-based tools to help people discover the good things in life. Her goal is to share the science of positive psychology with others to inspire curiosity, reflection and rejuvenation and ultimately help improve people’s everyday lives. When her daughter was born with PWS, she knew she needed to find a positive approach to life. It was a blessing in disguise and inspired a journey not only to survive but to flourish. Emily has a master’s degree in public policy and is a certified life coach and applied positive psychology practitioner through The Flourishing Center. She writes, manages communications and provides training for university health research groups in California and Barcelona, Spain.

 

Presentation: Using the Science of Resilience to Thrive as a PWS Family

Emily Felt

Have you ever felt overwhelmed by life with PWS? This session will introduce participants to the science of resilience and provide practical tools for putting it to use in the daily management of family life. Resilience is a concept studied within positive psychology, also known as the science of human flourishing. It is a broad field that encompasses aspects of public health, psychology, neuroscience, self-development, individual and organizational productivity and others. There is significant scientific research that shows that we can build our resilience skills through life’s challenges, leading to increased levels of positive emotion, physical health and well-being.  In this session, participants will learn about the scientific research on resilience, how to rewire the brain towards positive functioning and how to build resilience to support a flourishing family life in the context of PWS.

Janice Forster, M.D.

Janice Forster, M.D., is a developmental neuropsychiatrist who has been working with children, adolescents, adults with PWS and their families for over 30 years.  She has clinical experience with all levels of severity of the syndrome and across all living situations, from family to group home to inpatient hospitalization.  Because she has presented across the USA and around the world, Dr. Forster has a “world’s-eye view” of how the syndrome is managed.  More recently, she has become involved in research exploring the developmental phenomenology of PWS and the efficacy of interventions to reduce stress in fathers of adolescents with PWS.  She is  “one-half” of the Pittsburgh Partnership (www.pittsburghpartnership.com), established 15 years ago with Dr. Linda Gourash, for clinical consultation and education of professionals, families, and caregivers.  In addition to serving on the Clinical Advisory Board of PWSA (USA), Dr. Forster is also on the Clinical and Scientific Advisory Boards of the International Prader-Willi Syndrome Organisation (IPWSO.)

 

Presentation:  Psychiatric Medications

Janice Forster, M.D.

This lecture will describe when, why and how to use psychotropic medications in persons with PWS. The most commonly used medications will be identified, and their action in the brain will be described.  Target symptoms and potential side effects will be discussed.  The role of the parent in the treatment process will be emphasized.

Linda M. Gourash, M.D.

Linda Gourash, M.D., has worked with Developmental and Behavioral Disorders throughout her career as a Pediatrician.  Her extensive experience with Prader-Willi syndrome began in 1998 and she has worked with autistic spectrum disorder since 1980.  She has worked on multidisciplinary teams serving families with children and adults with PWS in both inpatient and outpatient settings. In her private practice with local patients, Dr. Gourash uses parent/family education in behavioral management as a cornerstone intervention, in addition to behavioral plans and medication. Dr. Gourash has served on the Board of Directors of the Prader-Willi Syndrome Association (USA) .  She is currently providing clinical consultation for the International Prader-Willi Syndrome Organisation and  PWSA (USA).  She provides consultation and educational programs throughout the US and internationally through Pittsburgh Partnership, Specialists in PWS. (www.pittsburghpartnership.com)

 

Presentation:  The Challenges of Adolescence: Keeping Your Child Healthy

Linda M. Gourash, M.D.

Medical and weight control crises during the adolescent years are preventable.  Dr. Gourash will draw from her experience with hundreds of cases of adolescents and young adults in medical crisis to identify the preventative measures you can take to assure that things do not get out of your control.  There are simple and doable strategies to assess and meet your child’s needs during these years.

Lisa Graziano, M.A., LMFT

Lisa Graziano, M.A., LMFT has been actively involved with local, state and national issues that impact persons with PWS since the birth of her son, Cameron, 20 years ago. She presents on a variety of aspects of PWS at conferences throughout the country, including behavior management, marital and family issues, and stress management, and she provides PWS training in the family home and at residential, work, and school settings. Lisa is former PWSA (USA) board member and PWCF’s prior executive director.

 

Presentation:  New Federal Rules Impact Your Future: New Tools to Help Keep Your Child or Adult with PWS Safe

Lisa Graziano, M.A., LMFT

New rules and regulations significantly affect residential providers, day programs, vocational work sites, volunteer sites… any provider that receives Federal funding anywhere in the United States. A critical component of the new Rules and Regulations directly impacts the health and safety of persons with PWS because they require that “Individuals have freedom and support to control their schedules and activities and have access to food any time.”

Prader-Willi California Foundation’s (PWCF) Home and Community Based Services (HCBS) Task Force has been working with various Federal and State agencies and PWS specialists to develop new tools to help families and providers advocate for a safe and appropriate environment for adults with PWS. This presentation will provide attendees with an overview of the major issues and introduce new tools developed to keep your adult safe now, and your child safe in the future.

There’s even a new tool to help parents of the school age child receive necessary supports and services including aide support!  You don’t want to miss this presentation.

 

 

James Loker, M.D.

Dr. Loker has been a pediatric cardiologist for almost 30 years.  He enjoys all aspects of pediatric cardiology but is particularly interested in echocardiography, fetal echocardiography, Adult Congenital Heart Disease, and children with special needs.  His daughter Anna with Prader-Willi syndrome has shaped his life and practice.  Along with his wife, they have been active in Prader-Willi syndrome on both the state and national level.  He is a member of the Clinical Advisory Board and mortality review committee for Prader Willi Syndrome Association (USA).  He is an Advisor for the International Prader Willi Syndrome Organisation (IPWSO).  He has contributed to multiple medical publications on Prader-Willi syndrome and helped organize and update the medical alert booklet.  He is a member of state committees on sudden death in the young, and newborn screening for congenital heart disease.  Dr. Loker sits on the National Advisory Board for the Congenital Heart Program at the University of Michigan.  He enjoys going on medical mission trips to Africa for congenital heart disease.  In his free time, he enjoys boating and scuba diving.

 

Presentation: Clinical Trials in PWS

James Loker, M.D.

This lecture will be an easy-to-understand discussion on current clinical trials regarding hyperphagia in Prader-Willi syndrome and why they are relevant.  There will be a discussion of the hunger pathways and how certain medications affect those pathways.   In addition, studies that have not yielded viable treatment options will also be discussed.

Patrick MacGrath

Patrick is also very passionate about helping families understand the complexities of special needs financial planning.  Patrick’s sister Heather has special needs and there is a unique balance and perspective needed when combining the traditional wealth model and special needs planning.

As a member of the Academy of Special Needs Planners, the Estate Planning Council of Northeast Wisconsin, and as a baseball coach for the Miracle League of Green Bay, Patrick is an active member of the Wisconsin community.

Patrick, his wife Kirsten, and their three kids, Malcolm, Owen and Norah live in Green Bay, WI, and enjoy everything the great Midwest has to offer.  From the lakes to the north woods, Patrick and his family enjoy traveling, playing sports and visiting with good friends and family.


Presentation:  Special Needs Financial Planning

Patrick MacGrath

Let’s take a walk down Special Needs Planning Way, shall we?  What is Special Needs Planning and why is it important?  From my family’s own experience with special needs planning to ensure that my sister Heather’s future is secure, this presentation will address seven key steps that will help you develop your Ultimate Special Needs Plan.

 

 

 

Amy McDougal, M.S.

Amy McDougall, M.S., has been a practicing School Psychologist in New York for seventeen years. Her professional experiences cover preschool to high school, with her responsibilities encompassing consultation, behavior intervention, crisis support, assessment and serving as the Chairperson for both CPSE and CSE. In her personal life, Amy is currently serving as President of the Prader-Willi Alliance of New York. She and her husband Harry have three children: Steven (24), Noelle (17, PWS) and Logan (15). Her “spare” time is spent at hockey rinks, lacrosse fields, horse barns and dance studios, cheering on her children.

 

Presentation:  Practical Behavior Solutions

Cindy Szapacs, M.Ed. BCBA & Amy McDougal, M.S

This session will offer participants take-home, practical solutions for behavior challenges often displayed by people who have Prader-Willi syndrome. The science of behavior behind these solutions will also be reviewed. A certified school psychologist and a board-certified behavior analyst, both of whom have a family member who has Prader-Willi syndrome, will present this information in terms and with practical examples so people with varying levels of background in behavior intervention can understand.

 

 

Amy McTighe, Ph.D.

Amy McTighe, Ph.D., is currently the Director Prader-Will Syndrome Care Coordination at The Children’s Institute of Pittsburgh. She is a graduate of Duquesne University where she received her Bachelor’s and Master’s degrees in Education with a focus on elementary education, special education, and reading and language arts. She obtained her PhD in Education focusing her research on students with disabilities and cognitive impairments. She is a graduate of the William & Mary Law School’s Institute for Special Education Advocacy. Dr. McTighe is currently the chair of the Special Education Advisory Board for PWSA (USA). She has presented various times on Prader-Willi syndrome at the national and international level.

 

Presentation: Building & Maintaining Healthy Relationships

Patrice Carroll, LCSW & Amy McTighe, Ph.D. 

Healthy relationships are a key factor in living a quality life. Disruptions in appropriate social skills, cognitive impairments and challenges in day-to-day living can impact a person’s ability to form and keep relationships. This session will explore strategies to assist individuals in creating and maintaining healthy friendships, romantic relationships and will explore issues related to sexuality.

Laura Bennett Murphy, Ph.D.

Dr. Laura Bennett Murphy completed her doctoral work in Clinical Psychology at Duke University.  She completed her residency and post-doctoral fellowship at Nationwide Children’s Hospital, The Ohio State University in Columbus, Ohio.  She currently is an Associate Clinical Professor of Pediatrics in the University of Utah School of Medicine, and practices at Primary Children’s Hospital in Salt Lake City.  Dr. Bennett Murphy is a pediatric psychologist specializing in the adjustment of children and families living with chronic illness.  She works with infants through young adults with a variety of medical conditions, but specializes in those children with feeding and eating disorders. She is a founding member and provider in the Eosinophilic Esophagitis and Food Allergy Clinic.  She also works in the Feeding and Swallowing Center at Primary Children’s, and in the Utah Prader Willi Syndrome multidisciplinary clinic. She presents widely on how children and families cope with adversity and is an expert in childhood trauma.

 

Presentation:  The Well Ones: Supporting Siblings and Families of Children with PWS

Laura Bennett Murphy, Ph.D., Emma Thornton, Jane Thornton

Caring for a child with PWS is a lifetime journey that affects the entire family.  Growing up with a sibling who has PWS creates unique opportunities and challenges.  In this seminar, hear about the research on siblings of children with PWS, and personal accounts of healthy adult siblings as they reflect on their experiences.

 

Cindy Szapacs, M.Ed. BCBA

Cindy Szapacs is a Board-Certified Behavior Analyst who has a Master’s Degree in Education from the University of Virginia. Ever since high school, she has been interested in helping people who have disabilities. She was lucky enough to turn her passion into a career and has been working in the field of special education, mostly using applied behavior analysis, since that time. She has worked both as a direct service provider to individuals with a variety of diagnoses between the ages of 1 and 21 as well as a consultant providing individual, small group and large group trainings to families and professionals.

Cindy currently works as a Behavior Analyst, supporting classrooms run by the Bucks County Intermediate Unit #22 in Pennsylvania. She also is a mother of two boys, one of whom happens to have PWS. Since joining the PWS family, she has learned a lot about this unique population and has made a point of educating  herself and other professionals on how to best meet the needs of those with PWS.

 

Presentation:  Practical Behavior Solutions

Cindy Szapacs, M.Ed. BCBA & Amy McDougal, M.S

This session will offer participants take-home, practical solutions for behavior challenges often displayed by people who have Prader-Willi syndrome. The science of behavior behind these solutions will also be reviewed. A certified school psychologist and a board-certified behavior analyst, both of whom have a family member who has Prader-Willi syndrome, will present this information in terms and with practical examples so people with varying levels of background in behavior intervention can understand.

v

Lisa Thornton, J.D.

Lisa Thornton is Mom to her daughter Kate, who just turned 16 and has Prader-Willi syndrome. Kate is the delight of the family!  Lisa has four other children, (two of whom are here presenting and helping with the conference), and a wonderfully supportive husband, Sid.  Lisa has served as president of the Utah Prader-Willi Syndrome Association for the last 14 years and was a board member for PWSA (USA) for six years. She helped start a very successful medical clinic in Utah, which has served adults and children with PWS for the last 10 years. She is helping with two college-like life-long programs for adults with intellectual disabilities, which currently serve over 80 students. Lisa has been an attorney for 31 years, currently practicing in the areas of estate planning and special needs legal planning. She has helped hundreds of families secure the legal planning needed to protect themselves and their child with special needs. You can contact Lisa at lisa@lisathorntonlaw.com.

 

Presentation:  Legal Planning and Guardianship Protection for Individuals with PWS

Lisa Thornton, J.D.

Do you wonder how to legally protect your child with Prader-Willi syndrome? Do you worry about how to care for your child and preserve their benefits now and after you pass away? Come spend a productive hour with Lisa Thornton, an attorney for 31 years who has helped hundreds of families secure guardianship and special needs legal planning. Lisa will present ideas for protecting your child’s SSI and Medicaid benefits. She will also show how to put legal protections in place for you and your child with PWS, including securing guardianship and setting up a special needs trust.   A free sample special needs trust for your child will be provided to all attendees.  Lisa has a 16-year-old daughter with PWS and understands the particular legal issues our families face.

Emma Thornton

Emma Thornton is a junior at Utah State University studying English Literature with a plan to attend medical school.  When she was four years old, her youngest sister Kate was born with Prader-Willi syndrome.  Emma grew up as a supplemental caregiver for her sister.  Kate will admit that Emma is her favorite in the family hierarchy, with mom, her food boss, coming in dead last.  Through the prolonged care and experiences with her sister, Emma has been motivated to devote time to research surrounding the topic of Prader-Willi syndrome.  Emma has worked with Dr. Jennifer Miller in researching the prevalence of RSV in babies with Prader-Willi syndrome.  She has also worked extensively with Dr. Dave Viskochil, Utah PWS clinic director and geneticist, to research and update best practices for Prader-Willi Syndrome Multi-Specialty Clinics.  She was also involved in creating an ongoing PWS sibling support group with the help of Dr. Laura Bennett Murphy.  Emma has helped with thirteen major fundraisers for PWS and volunteered at five PWSA (USA) National Conferences, helping with the YIP program.  Emma’s claim to fame is spending a summer helping Kate create an encyclopedic website of thousands of the Power Rangers.  You can check out their work at: https://ninjasteel29.weebly.com/

 

Presentation:  The Well Ones: Supporting Siblings and Families of Children with PWS

Laura Bennett Murphy, Ph.D., Emma Thornton, Jane Thornton

Caring for a child with PWS is a lifetime journey that affects the entire family.  Growing up with a sibling who has PWS creates unique opportunities and challenges.  In this seminar, hear about the research on siblings of children with PWS, and personal accounts of healthy adult siblings as they reflect on their experiences.

Jane Thornton

Jane Thornton is a junior at Utah State University studying Social Work. Her sister, Kate, with PWS, is two years younger and has had a profound influence on Jane’s life.  At fifteen, Jane was diagnosed with Post-Traumatic Stress Disorder from living with the constant stress of the syndrome. Their relationship was rocky in their teen years.  At one point, Kate ranked the members of her family and Jane was 9th in her family of 7!  As she struggled through the challenges of being Kate’s sister, Jane began to research and write about the effects of having a sibling with a developmental disability, specifically Prader-Willi syndrome.  She is currently working on research with Dr. Laura Bennett Murphy studying the affect Prader-Willi syndrome has on siblings and formulating precautions, measures and best practices to improve the lives of families and siblings.  Two years ago, Jane created a PWS sibling support group with the help of Dr. Bennett Murphy.  The group meets several times a year and held a weekend retreat this past summer in the beautiful mountains of Park City, Utah.  Jane has volunteered at the PWSA (USA) National Conference for years, helping in the YIP program.  She is also a constant volunteer with the Utah Prader-Willi Syndrome Association and is fiercely loyal to her sister, Kate.

 

Presentation:  The Well Ones: Supporting Siblings and Families of Children with PWS

Laura Bennett Murphy, Ph.D., Emma Thornton, Jane Thornton

Caring for a child with PWS is a lifetime journey that affects the entire family.  Growing up with a sibling who has PWS creates unique opportunities and challenges.  In this seminar, hear about the research on siblings of children with PWS, and personal accounts of healthy adult siblings as they reflect on their experiences.v

Karen Tyson, Psy.D.

Karen Tyson, Psy.D.,is a Pediatric Neuropsychologist and the Chief Clinical Psychologist at the LD-ADHD Center of Hawaii. She has a Doctorate in Clinical Psychology and post-doctoral specialty training and certification in neuropsychology. She is a nationally recognized expert in the area of learning disabilities, ADHD and Autism. She is on faculty for the Institute for Special Education Advocacy at the William and Mary School of Law and is called on to testify in court for learning disabled students across the United States. Her clinic, the LD-ADHD Center of Hawaii, has multiple offices on Oahu and also on the Big Island. She specializes in learning disabilities, ADHD and Autism and conducts exhaustive neuropsychological evaluations to assist families and schools in better understanding a child’s strengths and deficits. She is also an active researcher. Current research studies include gender differences in girls with autism as well as a reverse longitudinal study of the effects of Pitocin on the brain and possible correlations with Autism Spectrum Disorder.

 

Presentation:  What do all these test scores really mean?

Karen Tyson, Psy.D.

Learn how to understand psychological and neuropsychological test scores, how to interpret test data and understand standard scores, T-scores and scaled scores. What do these scores mean and what and how do they measure? Dr. Tyson will cover gold standard evaluations and teach parents how to request specific tests and why they are so necessary to gain a full clinical picture. Her presentation will provide tips and tactics on how to interpret and understand how some data can be misleading and what to look for in an evaluation.  Additionally, she will talk about diagnoses that often co-occur with PWS,  what should be evaluated and how to obtain the best outcomes for your loved one.

Harold J.P. van Bosse, M.D

Harold J.P. van Bosse, M.D., has been practicing pediatric orthopaedic surgery exclusively since completing his orthopaedic residency at the University of Illinois in Chicago in 1994, and his fellowship at Toronto’s Hospital for Sick Children in 1995. He joined the staff of the Philadelphia’s Shriners Hospital for Children in 2008, allowing for a more focused practice treating conditions of special interest. His interest in Prader-Willi syndrome developed from treating a two-year-old child with PWS and severe scoliosis. Through that patient, Dr. van Bosse was introduced to the community of specialists caring for children with PWS, joining them to round out the comprehensive care of these challenging and rewarding patients. Much of his efforts have been treating the very young child with PWS and spine deformities. For these children, treatment is devoted to the least invasive modalities that will preserve spinal growth and chest development. These include bracing, spinal casting and expandable implants, to avoid a spinal fusion during childhood.

 

Presentation: Muscle, Bone, Balance & Tone

Janice Agarwal, PT, CNDT & Harold J.P. van Bosse, M.D

Some of the important hallmarks of Prader-Willi syndrome are related to musculoskeletal issues, such as developmental delay due to their hypotonia, flat footedness, and scoliosis. We will discuss how these problems present, and what different options are available for treating them, in a tag-team style presentation with a physical therapist recognized as one of the country’s foremost experts on physical development therapy for children with PWS, and a pediatric surgeon with a large patient population of children with PWS. We will touch upon various options for helping children with PWS gain muscle and bone strength and examine strategies for monitoring of spine and hip problems. Focusing on the spinal deformities, we will outline a treatment process, including bracing, spinal casting, expandable spinal implants and spinal fusion. We will also discuss anesthetic and post-operative recovery concerns for children with PWS undergoing surgery. The presentation will be in slide show format, and questions will be answered at the end of the session, time permitting.

Stefanie Varga, Ph.D.

Stefanie Varga Ph.D., is a licensed clinical psychologist and neuropsychologist who has been providing consultation, assessment and therapeutic services to individuals across their lifespans for over twenty years. She has a special passion for working with young children and adolescents with co-existing medical and mental health disorders, and their families. Dr. Varga has expert skills in pediatric psychology and neuropsychological assessment. She has worked in a range of settings that include healthcare, schools, outpatient clinics and hospitals. She is known locally as a highly skilled and compassionate psychologist. Dr. Varga has presented both locally and nationally on a number of topics related to special populations and mental health. Dr. Varga is the founder and owner of Treehouse Psychology in Stillwater, MN, an outpatient clinic dedicated to the mental health of children, adolescents, and their families. Outside of clinic she is an expert consultant to the courts, child protection and juvenile corrections. Dr. Varga completed graduate studies in Educational Psychology before receiving her M.A. and Ph.D. in Clinical Psychology. She lives with her husband and three children in Hugo, MN. Her daughter Sabina, age 10, was diagnosed with Prader-Willi syndrome as an infant.

 

Presentation:  Parenting: Supporting the Whole Family

Stefanie Varga, Ph.D.

 The parents and siblings of individuals with PWS play integral roles in the lives of their families over the course of a lifetime, yet their experiences and challenges are often neglected or go unnoticed. While living with a family member with PWS brings many rewards, it also brings unique demands to parents and continued adjustments to the family unit. This session will address the associated stresses faced by parents and siblings living with a family member with PWS. Focus on the common issues faced by siblings of all ages, with recommendations for parents will be covered. The mental health of parents and other family members will be discussed. The session will conclude with recommendations for siblings and parents, ranging from self-help techniques to professional interventions.

 

 

Stacy Ward, M.S.

Stacy Ward is the Director of Family/Medical Support & Special Projects for PWSA (USA).  She has more than 15 years of experience working with and advocating alongside individuals diagnosed with Prader-Willi syndrome.  Stacy has presented at conferences throughout the county on a variety of topics related to PWS, including behavior management, educational needs, and residential services and staff training.  Prior to working for PWSA (USA), Stacy spent a decade working in residential management.

 

Presentation:  Transition Planning/Supportive Living Options

Stacy Ward, M.S.

Learn what to expect when planning for the transition from high school to adult services.  A summary of the different types of supportive living options that are available throughout the country will be provided, including important questions to ask when researching what is most appropriate for your loved one.

Mary K. Ziccardi

Mary K. Ziccardi has worked providing services and supports to people with developmental disabilities for over three decades.  She is currently employed as the Regional Director at REM Ohio, a partner of The MENTOR Network, overseeing programming in sixteen counties in northern Ohio.  Ms. Ziccardi is the Co-chair of PWSA (USA)’s Professional Providers Advisory Board (PPAB) as well as Co-chair of the 2019 Provider’s Day.  Along with the PWSA (USA) provider, special education advocacy and family resource activities, Mary K. has remained active with the international provider community, co-chairing IPWSO’s Professional Provider Caregiver Board.

 

Presentation: Preparing For Your Child’s Individual Educational Plan (IEP)

Mary K. Ziccardi

There are several helpful and practical pieces of advice experienced parents, advocates and friends will give others as an IEP date approaches—but none may be more important than the advice to spend the time to be well prepared.  This session will focus on the specific areas of IEP development, how to prioritize the items most important for your student and the meeting collaboration strategies that everyone must use to produce the most meaningful results.  You know your child better than anyone else around the table and the entire team is counting on your preparation, organization and leadership—and we will help prepare you to do just that in every meeting you attend!

Get Ready for the 2019 PWSA (USA) National Convention!

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