Prader Willi-Syndrome Association of Indiana (PWSA-IN) is honored to be hosting the Midwest Prader Willi Conference in downtown Indianapolis on October 15th. The conference will be bring speakers who have specialized in PWS from across the United States. At PWSA-IN the conference is part of our mission to continue to provide education, advocate and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.
Part of goal as an organization is to try to make resources available and as affordable as possible for our state. With that in mind we are able to offer the conference at a cost of the conference is $35 per person (conferences typically run ($100+), and a special discounted rate for educators of $15.
Date: Saturday October 15th 9am-4pm
Location: Ruth Lilly Learning Center at Riley Children’s Hospital Outpatient Center
Address: 705 Riley Hospital Drive, Indianapolis, IN 46202
Flying: We recommend flying into Indianapolis International Airport
Meals: A lunch option will be provided at the conference. Please not we are consulting with IU health on the lunches however we can do individualized meal plans. If you or your loved ones need to bring in a special lunch to venue that will be ok, we will have calorie information set out on the dining options we have.
We are very excited to be bringing in a variety of PWS experts from across many different fields for this conference. Below is information on each:
Janice is a pediatric physical therapist with over 20 years of experience treating children birth to 3 years of age. She’s a graduate of Northeastern University in Boston, MA. Janice was part of the Boston City Hospital neurodevelopmental evaluation team and the St. Mary’s Hospital for Children early intervention team in Queens, NY. She received certification in Pediatric (NDT) Neurodevelopmental Training at the Bobath Center in London, England. She has lectured nationally and internationally on Developmental Interventions and Sensory Integration (SI) for hypotonic children and children with Prader-Willi Syndrome PWS). Using techniques incorporating SI to normalize development, she now only treats children with PWS. PWSA (USA), published her book Therapeutic Interventions for Children with Prader-Willi Syndrome in 2011. Janice is a former 9 year member of the PWSA (USA) Board of Directors. She is the mother of two boys, Alex age 16 (PWS) and Sam, age 15.
Sara is an Area Director at REM Ohio, a partner of The MENTOR Network, responsibilitiesinclude residential, transportation, and day services. This includes 6 PWS residential sites, serving 22 adults with the syndrome or PWS like syndromes. During her tenure at The MENTOR Network, Sara has worked with a variety of different teams to develop various supports for the individuals she serves. Sara has presented at both national and international PWS conferences on residential services. Sara will eb part of our residential panel discussion.
Dr. Johnson is a Pediatric Endocrinologist at Riley Hospital for Children in Indianapolis. She has a special interest in the care of children with PWS and is the director of the PWS Endocrine clinic there. Originally from Michigan, she received both her BS and MD degrees from the University of Michigan and completed her Pediatric Internship there before moving to Indianapolis where she finished her Pediatric Residency. Her Pediatric Endocrine Fellowship was also at Riley Hospital. In addition to her clinics at Meridian Crossing in Carmel, IN, she sees patients at the South Bend Clinic. Dr. Johnson will be presenting on the services and areas of importance in her field as it relates to PWS.
Jackie has worked in a residential setting since 1985. She has worked directly with children and adults who have been dually diagnosed. She has extensive training, experience, and education in the areas of behavior/crisis management, and program/staff development. She has worked exclusively with individuals with Prader-Willi syndrome since 1996, providing educational training, support, guidance and consultation nationwide. Jackie is a consultant that works with PWS specific group homes, the current Vice President for PWSA-Wisconsin and on the board since 1997. She has been extremely active in supporting the mission of PWSA (USA) and has been on Board of Directors since 2006. She also takes an active role in supporting providers as a member on both the PWSA-USA Professional Providers Advisory Board and IPWSO Professional Caregivers Board. Since 1997 she has enjoyed sharing her knowledge as a presenter at the National and International level for PWSA (USA)/IPWSO, and cherishes the opportunity to personally grow through the experience and knowledge of others that she has met over the years.
Jackie will be part of the residential panel discussion and will be doing a presentation on residential services for individuals with PWS.
Retired Sergeant Tammie Penta worked for the Tucson Police Department where she was a police officer for over 27 years, with the last 20 as a sergeant. Tammie was a detective sergeant for the Elder Abuse Task Force, which included investigations of vulnerable adults, the Child Abuse/Homicide Unit, Special Investigations and Aggravated Assault Unit. Additionally she was the training supervisor responsible for new officers coming into law enforcement and completed her career as the administrative supervisor for the largest division in the city.
Sgt. Penta worked for many years as one of the instructors for the Crisis Intervention Training of officers in Southern Arizona. This training gave officers the tools needed to interact with our developmentally disabled population and also introduced them to Prader-Willi Syndrome.
Over the last 20 years, Tammie has provided training to state group homes and families as it relates to law enforcement interaction as well as advocating for families who have had law enforcement involvement in the schools or where arrests have been made on PWS Staff or people with PWS.
Sgt. Penta has been on the Prader-Willi Syndrome Arizona Association board since 1996 and has been on the Prader-Willi National Board since 2014. She is the proud mother of Victor who is 22 with PWS.
Conference Presentation: OH NO FIVE-0!
A guide to prevention and education with Law Enforcement
This course will provide introductory information on how to best prepare for an incident dealing with a family member, client or staff and law enforcement. Preparation before a crisis situation is critical for both law enforcement and the provider or caretaker in order to provide the person with PWS the best service and positive outcome possible. This class will teach parents and professionals various ways to accomplish this and how to best work with law enforcement so that officers have a knowledge base about your child or the group home and their clients. Information will be provided on how to contact law enforcement and what information should be provided and when. Additional topics will include what to do when family or a staff member is accused of a crime that results in an investigation or arrest; What to do when the person with PWS is arrested or being investigated for a crime and understanding law enforcements responsibilities and expectations. Finally, the class will learn about civil remedies that may allow for an alternative to criminal charges.
dietician IU health
*Mary K. Ziccardi*
Mary K. Ziccardi is a Regional Director at THE MENTOR Network, where she has enjoyed employment for nearly twenty‑eight years. Ms. Ziccardi is responsible for the region of northern Ohio, where over 300 individuals are supported by over 400 employees in a variety of residential, habilitation, transportation, and vocational programs. Mary K. has been actively involved with PWSA USA for many years including serving on the special education advisory board and the professional providers boards.
Mary K will be presenting on special education and advocacy at the conference.
*Nancy Anker Wright*
Indianapolis boasts lot of fun things to do and see including a world class children’s museum and zoo. To check out a guide of the cities attractions click here.