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2021 OPWSA Virtual Conference & AGM

Thank you to everyone who joined us for OPWSA's Virtual Conference that took place from Tuesday, November 9th to Friday, November 12, 2021. The conference featured presentations on a wide range of topics including behaviour, school support, new diagnosis, and an update on residential options update.

Information about the sessions as well as links to the recordings and slides can be found below.

Finding Your Footing on This New Journey: A Meeting for New Diagnosis Families

Dr. Sanjukta Basak, PWS Clinic at Kindercare Pediatrics; Holly Sine, OPWSA Co-Chair and Parent;
Kristina MacDonald, OPWSA Board Member and Parent; Jennifer Coens, OPWSA Executive Director

We may be rare, but we are united. One step at a time, together we can accomplish amazing things. Take part in this opportunity to ask questions and share experiences with other PWS families.

 Sessions 

Cindy Szapacs, M.Ed. BCBA

Cindy is a Board Certified Behavior Analyst who currently works as a consultant for classrooms run by the Bucks County Intermediate Unit in the state of Pennsylvania. She began supporting individuals who have disabilities in high school and has been lucky enough to continue on that path as she moved through college and into a career.

Through the years, she has been both a direct service provider and a consultant for individuals ranging in age from 1 – 21 years of age as well as for families and school teams in homes, public schools and private schools.

In addition, Cindy is a parent to a child who has Prader-Willi Syndrome. She is dedicated to helping other families who have a relative with PWS understand their loved one’s behavior and use behavior strategies rooted in science.

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Holly Sine, OPWSA Co-Chair and Parent

Holly is the President of the Pagnan Group Inc., an Animal Health and Human Health Consulting business. She specializes in generic pharmaceutical commercial operations for both the veterinary and human industry. Holly possesses a Pharmaceutical Regulatory post university diploma and has over 13 years of experience previously working with Teva Canada Ltd. registering oral and injectable generic pharmaceutical products with Health Canada.

Holly graduated with a double major in Human Biology and Economics from the University of Toronto. While at U of T, Holly was a varsity athlete for the women’s basketball team. Holly received an OUA All-star designation, OUA championship title and competed in the CIS championship tournament in her senior year.

 

In January 2014 Holly and her husband Michael welcomed their twins Jack and Kyrie (now 7 years old) to join their family with sons Grant (20) and Quinn (18). Jack was diagnosed with PWS at 2 months of age. The Sine family resides in Burlington Ontario. The Sine’s love to travel, spend time with family and visit their cottage during the summer. 

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Positive Behaviour Support: Strategies, Challenges and Solutions

Stacy Ward, M.S., Director of Family Support, PWSA | USA

Behaviour problems commonly associated with PWS are often described as debilitating, life-disrupting, and emotionally draining. This session will provide an overview of some of the most effective behaviour management strategies and interventions that effectively reduce the potential for unwanted behaviours.

Exploring Housing Options for Adults with PWS

Cathy Mallove, OPWSA Board Member and Parent; Kelly Casey, KCP Solutions; Patricia Parker, Parent

Learn about Ontario's developmental services housing situation, results from a recent OPWSA survey on Adult Planning, Supports and Services, and how some PWS families are planning for their child's future.

Your Child and the School System: Info & Tips to Help You Advocate for Your Child

Cathy Shiner, OPWSA Board Member and Educator; Marla Fine, OPWSA Board Member and Educator

This session is a brief overview of how Special Education works in Ontario schools; we’ll identify key transition times during the school year and from year-to-year to be aware of and to plan for, as well as discuss some effective advocacy and communication strategies for use with your child’s school. We’ll also explain some of the many acronyms and education terms used in the school system, and share some examples and experiences of other OPWSA families.

Professional Providers Session

Stacy Ward, M.S., Director of Family Support, PWSA | USA; Filipa Almeida, Program Supervisor, Vita CLS

This session is only for professional providers/agency staff. Have questions about how to best support individuals with PWS in your agency? Come join this open dialogue with Stacy Ward from PWSA | USA, and Filipa Almeida from Vita CLS in Toronto to discuss best practices in supporting individuals with PWS.

Understanding Prader-Willi Syndrome and Autism

Cindy Szapacs, M.Ed. BCBA

Prader-Willi Syndrome is a relatively straightforward diagnosis. Once symptoms are observed, a blood test can confirm the diagnosis. But, what do you do when you suspect your child, who already has a PWS diagnosis, may also have autism? Many of the behavioral characteristics of PWS are similar to those of autism. Cindy will explain how the two diagnoses are similar and different, why and when to consider an autism evaluation and what the diagnosis, or lack thereof, ultimately means for the child and their family. 

OPWSA AGM

Jennifer Coens, OPWSA Executive Director; Holly Sine, OPWSA Co-Chair; Rob Pividor, OPWSA Co-Chair

Learn more about OPWSA, the work we’ve been taking part in throughout 2021, and our plans for the future.

PRESENTER BIOS
 

Cathy Mallove, OPWSA Board Member and Parent

Cathy is a former co-chair and current director on the board of the Ontario  Prader-Willi Syndrome Association, and currently leads the OPWSA Residential Options Working Group. 

She is a communications professional with experience in the public, non-profit and private sectors. Her areas of expertise include strategic communications planning, organizational change management, stakeholder engagement, corporate reputation and issues management, media relations, strategic planning, business process improvement and consensus building among divergent interests.  

 
She and her husband Martin live in Toronto with their two daughters, Natalie and Rebecca (PWS). 

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Cathy Shiner, OPWSA Board Member and Educator

Cathy Shiner is an experienced educator with extensive teaching and leadership experience in both private and public school settings. She holds several specialist teaching qualifications, including Principal’s Qualifications, and brings insight and understanding to the complex issues surrounding special education. She has worked closely with students, families and teachers in a wide range of settings for over 30 years.

Cathy recently retired from the Toronto District School Board and continues to teach with the board as an occasional teacher.

 

Cathy has been an active and engaged member of her community, in many capacities. In particular, she is involved with Canadian Hadassah Wizo (CHW), a women’s charitable organization that fundraises for community programs and health initiatives in Canada and Israel, and holds several key leadership and fundraising positions within her CHW chapter. She has also been very involved in the schools her daughters attended over the years, and in her small, community-driven synagogue.

 

Cathy is a graduate from Western University with a degree in Physical Education and the University of Toronto with a Graduate Diploma in Child Study. She is the mother to two delightful daughters, who provide grounding and insight into all aspects of millennial life. She is an avid gardener and looks forward to every opportunity she can spend time outdoors in all seasons.

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Kristina MacDonald, OPWSA Board Member and Parent

Kristina MacDonald has dedicated her life to raising her daughter Ellie, helping her succeed as the beautiful young girl she is. Helping people succeed through the establishment of comfort levels has been an ongoing passion throughout her success.

 

Ms. MacDonald has over 10 years experience in various Sales and Marketing roles, ranging from a National Sales Manager to most recently a Brand Ambassador. 

When Ellie was diagnosed with Prader-Willi Syndrome, there was a significant shift in priorities. Consistent research and development strategies had to be established and maintained. Kristina has made a creative and exciting life for her daughter and will push through any boundaries in their way. 

 

During the past 3 years, Kristina has successfully engaged with small-medium businesses, encouraged contact and contributions to support fundraising efforts, enhancing quality for our Prader-Willi Community.

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Marla Fine, OPWSA Board Member and Educator

Marla is a retired teacher with more than 30 years experience working as a Special Education teacher, teacher-librarian and Special Education Consultant. She worked closely with students, families and staff in a variety of settings and developed an extensive knowledge of Special Education programs, policies and procedures. She holds a Masters degree in English, a Bachelor of Education, and a Specialist in Special Education from the University of Toronto. She continues to tutor and consult privately.

Marla is a former board member of St. Alban’s Boys and Girls Club, the Toronto Playgrounds Baseball League and the Canadian Association for Tay-Sachs and Allied Diseases (CATSAD). Her volunteer work included running a parent peer group, creating parent resources, organizing fundraisers, serving as Treasurer, presenting at conferences, and liaising with other patient and health organizations. Marla is very happy to serve on the OPWSA board and help to support this community.

Marla and her husband Bob live in Toronto. They have two adult sons, Wyatt and Jesse, and a daughter-in-law, Beth. Their daughter Elizabeth passed away at the age of 4 from Tay-Sachs disease.

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Dr. Sanjukta Basak, PWS Clinic at Kindercare Pediatrics

Dr. Sanjukta (San) Basak completed her medical degree at McGill University, followed by a Paediatric residency and Paediatric Endocrinology fellowship at the Hospital for Sick Children in Toronto.

She completed an additional year of clinical fellowship in San focusing on pediatric obesity, as well and training in social behavior change, and motivational interviewing. She works at Rouge Valley Centenary Hospital in Scarborough in the Diabetes, Endocrinology and pediatric obesity clinics. She also works at Kindercare pediatrics in their Endocrine and Prader-Willi Syndrome clinics.  

 

San is also completing a Masters of Community Health with a focus on health practitioner and patient education at the University of Toronto. She is passionate about teaching and is actively involved in both patient and medical education.

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Stacy Ward, M.S., Director of Family Support, PWSA | USA

Stacy Ward is the Director of Family Support for PWSA | USA.  Stacy holds a Master’s Degree in Applied Behavior Analysis, and is a graduate of William and Mary College of Law Institute for Special Education Advocacy and is currently enrolled in the Council of Parent Attorney and Advocates SEAT 2.0 program.  She has written many articles on Prader-Willi syndrome, published a video on behavior management and recently authored two chapters in the Management for Prader-Willi Syndrome, Fourth Edition textbook.   She has 20 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. 

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Dance Party

Michelle Hillier, Experience Groove

Michelle Hillier from Experience Groove will be hosting a 30 minute Virtual Dance Party/Wellness-Focused Movement Experience for individuals with PWS of all ages.  No dance experience required! Just come and have fun!