Event Details

Place Novotel, Mississauga, Ontario (near Square One) (View Larger Map)
Address 3670 Hurontario St, Mississauga, ON L5B 1P3
Date May 4, 2019
Time 9:30am – 5:30pm
Registration Fee

$60/person (Includes lunch)

**There will not be a day program for individuals with PWS** Please click on "Who" tab for more info.

View Larger Map

Novotel, Mississauga, Ontario (near Square One)

Place Novotel, Mississauga, Ontario (near Square One) (View Larger Map)
Address 3670 Hurontario St, Mississauga, ON L5B 1P3
Date May 4, 2019
Time 9:30am – 5:30pm
Registration Fee

$60/person (Includes lunch)


**There will not be a day program for individuals with PWS** Please click on "Who" tab for more info.

View Larger Map

Novotel, Mississauga, Ontario (near Square One)

FPWR Canada National Family Conference
Make it Happen!

Agenda: Saturday, May 4, 2019.
(Location: Novotel, Mississauga at Sussex Centre)

Download the PDF agenda

9:30– 10:00a.m.

Conference Registration

10:00 – 10:10 a.m.

Opening Remarks from Tanya Johnson

Conference Chair, VP and Co-founder of FPWR Canada

Chair, 2019 FPWR Canada National Medical Conference
Location: Grand Ballroom
10:10 – 11:20 a.m.

Sleep Panel: Dr. Colin Shapiro (PhD, FRCPC), Dr. Phyllis Zee, Chief of Sleep Medicine in the Department of Neurology at Northwestern, Dr. Lara Pullen (PhD, President and Founder of Chion Foundation)

Learn about sleep Issues in PWS and possible treatments/supplements that are available. Provigil, Pitolisant, Tryptophan, C-PAP machine have all been tried in our PWS Community. Do they work? Are they available in Canada? Do they improve sleep issues, why or why not? Are they safe?

11:20 – 12:30 p.m.

Dr. Jill Hamilton Head of Endocrinology at SickKids Hospital, Toronto

Growth hormone is a known and effective treatment for PWS for many years. Dr. Hamilton will review its benefits, risks, proper dosage and the various ways to access it in Canada. She will also review Puberty in PWS (what that looks like and ways to address it). Dr. Hamilton is working with Levo Theraputics to run our first clinical trial at SickKids Hospital.

Celine Lepage GH submission update / Drug access in Canada

Celine LePage (Parent who leads FPWR’s Drug Access committee) will give a brief update on her progress and share information she has gathered over the past 6 months and what we can do as a community to gain drug access in Canada more efficiently.

Sara Cotter - Levo Theraputics

Find out about a promising treatment to reduce anxiety and hyperphagia (Carbetocin) and how you can enrol in the study right here at SickKids Hospital.

12:30 - 1:40pm

Lunch Sponsored by Levo Theraputics Let’s Talk Nutrition with Dr. Kaleigh Zinger ND

Kaleigh will show us how diet can impact mood and behaviour? She will also introduce the MODIFIED Ketogenic Diet and show us how it can help everyone.

1:40 – 2:30 p.m.

Elizabeth Roof Psychologist and Senior research specialist at Vanderbilt University Tennessee

Elizabeth will share her expertise on behavioural strategies and possible therapies/treatments for all people with PWS. She will also show us how to improve social functioning and how research has led to developing effective strategies for addressing the social challenges people with PWS experience.

2:30 – 3:30 p.m.

Breakout Sessions

0-4 – New Parent Sharing

Parents will share tips and stories of hope to help you get started in this journey.
Location: Mississauga Room West

4-17 – Special Education Advocacy (Tanya Johnson – Special

Education Teacher) Learn how to advocate for your child in the school setting, most important parts of the IEP and how to work with school team to help your child reach their maximum learning potential.
Location: Grand Ballroom

17+ - Adults with PWS

More time with Elizabeth Roof and Patrice Carroll (Latham Centre) to discuss strategies and treatments related to mental health/behaviour and life beyond high school.
Location: Mississauga Room Centre

3:30 – 4:00p.m.

Break/Visit Booths

Welcome Levo Theraputics, Path for PWS, OPWSA, Community Living, Glow Sleep Services

4:00 – 5:00 p.m.

Dr. Theresa Strong, PhD, Director of Research Programs, FPWR

Updates in research and clinical trials available to Canadians. What has FPWR Canada funded and what have we learned? Where are we now and where are we going? Why is it important to participate in the Global PWS registry?

5:00 – 5:45p.m.

Keegan Johnson (Co-Founder of FPWR Canada) A Father’s Perspective

Keegan will share personal stories of how we got our son, Dante (14 years old) exercising daily and how we make it work. Keegan’s parenting style is unique and his positive but firm approach has led to many successes. He will share his journey with PWS and share the importance of why we need to come together as one community to “Make it Happen”.

All PWS Parents, Medical Doctors/Professionals/Therapists/Teachers are welcome to attend!

FPWR Canada is very excited about this year’s conference – “Make it Happen”. We have made so much progress in the last 10 years and we want to share it all with you. Millions of dollars raised and spent on research around the world and Theresa Strong will tell us all about it! Canadians are “making it happen” from coast to coast and changing the landscape of PWS. But the most valuable part of attending this conference will be connecting with other parents, sharing what you’ve learned and learning something new that you can take home and try immediately! Our PWS community is full of doers, hard-workers and incredible families who continue to fight and search for answers. Be surrounded by them, talk to the experts yourself and get ready to have some fun! This conference would not be possible without our Conference committee made up of parents. Feel free to reach out to any one of them if you have questions about the conference:

Chair Tanya Johnson
Committee Members Michelle Cordeiro, Silvia Rinaldi, Laura Birnie, Jenn Joseph, Susan Sims, Brooke Gibson, Belinda Jones, Simina Ardeleanu,
Important Note

After careful consideration, we have decided not to offer a day program for individuals with PWS. The People with PWS program has been offered in the past however, we are focusing our energy on other aspects of planning this year. We sincerely hope that every person interested in attending the conference has the opportunity to do so because it is going to be an exciting event filled with parent-bonding and learning (sometimes we need the break too ;). It is a great time to use respite or your support worker to give you the opportunity to learn new strategies and get energized. If you would like to be connected to other families requiring care during conference hours please let us know as we would be happy to assist you. If your child with PWS is under the age of 2, feel free to bring them to each session under your direct supervision.

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