2020 Virtual PWS Family Conference

Presented by Levo Therapeutics - October 6th - 9th

With the support of our sponsors, we are bringing you all the content of our traditional conferences LIVE and for FREE! Join us for Conference Week - October 6th - 9th, 2020.

How Does it Work?

All sessions will be conducted LIVE at the times listed below. Time will be reserved at the end of each presentation for Q&A so come prepared to ask questions of the presenter! If you wish to attend a live session, you will need to register for that session. Sessions are limited to our first 100 registrants. All sessions will be recorded and made available for viewing approximately 2 weeks after the conference.

Program Overview

	Tuesday October 6	Wednesday October 7	Thursday October 8	Friday October 9
11:30 AM ET	What's Happening in PWS Research?	PWS Clinical Trials Panel	Behavior Fireside Chat	Take Action for PWS Research!
1:15 PM ET	Optimal Nutrition (all ages)	Improving Social Functioning (ages 5+)	Orthopedic Challenges in PWS (all ages)	Acceptance and Commitment Parent Training (all ages)
1:15 PM ET	Moving the Barriers for Improved Behavior (ages 5+)	New Parent's Connect Session (newly diagnosed)	Grandparent's Connect Session (grandparents)	Navigating Your Insurance Plan (0-2 years)
3:00 PM ET	Deconstructing Anxiety in PWS	Return of Results: CARE-PWS	Return of Results: DESTINY-PWS	Clinical Trial Highlight: Pitolisant

Session Descriptions and Registration

	What's Happening in PWS Research? Join Theresa Strong and the FPWR Research Team to learn more about what is happening in PWS research and what you can be excited about! Be prepared to ask your research questions to the team! Live! Tuesday, October 6 @ 11:30 AM ET Register for this session >>
	Optimal Nutrition with Melanie Silverman What foods should you include in your nutrition plan and what foods should you avoid? Melanie Silverman provides nutrition tips for your loved ones with PWS. Live! Tuesday, October 6 @ 1:15 PM ET Register for this session >>
	Moving the Barriers for Improved Behavior Sensory Processing Disorder, Executive Functioning Disorder and challenges with Theory of Mind are all things that can get in the way of your child living their best life. Let’s talk about ways to move these barriers out of the way to allow your child to thrive and achieve their definition of a quality life. Live! Tuesday, October 6 @ 1:15 PM ET Register for this session >>
	Deconstructing Anxiety in PWS What does anxiety look like in the person with PWS? What leads to anxiety and how can it be treated? Dr. Deepan Singh will cover these topics and more! Live! Tuesday, October 6 @ 3:15 PM ET Register for this session >>
	PWS Clinical Trials Panel Stay up to date and learn the latest in current PWS clinical trails directly from trial representatives. Panelists include: Dr. Theresa Strong, Saniona, Harmony Biosciences, Dr. Eric Hollander and others to be announced. Live! Wednesday, October 7 @ 11:30 AM ET Register for this session >>
	Improving Social Functioning People with PWS struggle with social skills. In this 60-minute workshop, Elizabeth Roof will provide a brief overview of social functioning and ideas for how to work on these skills at home. Live! Wednesday, October 7 @ 1:15 PM ET Register for this session >>
	New Parent's Connect Session This special session is for parents who have received the PWS diagnosis within the last 24 months. Learn from parents who are on this same journey and connect with other new families. Live! Wednesday, October 7 @ 1:15 PM ET Register for this session >>
	Return of Results: CARE-PWS Levo Therapeutics has announced the promising results of their phase 3 clinical trial of carbetocin. In this session, they will provide greater insights into the trial data as well as next steps for making the drug available to treat PWS. Live! Wednesday, October 7 @ 3:00 PM ET Register for this session >>
	Fireside Chat: Social Skills & Cognition Challenges in PWS. What we have learned. Join us for a lively conversation with our PWS behavior experts, Elizabeth Roof, Anastasia Dimitropoulos, Louise Gallagher, and Lauren Schwartz-Roth as they discuss what we know about social skills and social cognition challenges in PWS and what we can do to address these issues so our kids can be more successful. Live! Thursday, October 8 @ 11:30 AM ET Register for this session >>
	Orthopedic Challenges in PWS Dr. Van Bosse has been practicing pediatric orthopedic surgery exclusively since 1994 and has helped hundreds of patients with PWS. In this session, he will discuss the diagnosis and treatment of orthopedic challenges in PWS. Live! Thursday, October 8 @ 1:15 PM ET Register for this session >>
	Grandparent's Connect Session Learn more about how you can support your loved ones while connecting with other grandparents of children who have PWS. This session is limited to grandparents and extended family members of children with PWS. Live! Thursday, October 8 @ 1:15 PM ET Register for this session >>
	Return of Results: DESTINY-PWS Soleno Therapeutics has announced the promising results of their phase 3 clinical trial of DCCR. In this session, they will provide greater insights into the trial data as well as next steps for making the drug available to treat PWS. Live! Thursday, October 8 @ 3:00 PM ET Register for this session >>
	Take Action for PWS Research! You value PWS research and want to ensure that we find treatments for PWS. Join us for a panel of parents, like yourself, and hear how they have taken action for PWS research. Live! Friday, October 9 @ 11:30 AM ET Register for this session >>
	Acceptance and Commitment Training Acceptance and Commitment Training builds skills for living with greater awareness, openness, and engagement in valued life pursuits. This 90-minute workshop, led by Drs Janice Forster and Stuart Libman, will help you improve the skills that allow you to more effectively manage your parenting endeavors. Live! Friday October 9 @ 1:15 PM ET Register for this session >>
	New Parents: Navigating Your Insurance Coverage and Estate Planning Hear successful strategies for maximizing your insurance benefits and estate planning with Brian Kalasek, VP of Special Risk for Mutual of Omaha insurance company and dad to a young son with PWS. Live! Friday, October 9 @ 1:15 PM ET Register for this session >>
	Clinical Trial Highlight: Pitolisant for PWS In this session, you will learn more about the investigation of Pitolisant in people with Prader-Willi syndrome. Topics to be discussed include: What is pitolisant and how does it work? Why study pitolisant in patients with PWS? And an overview of Harmony's Phase 2 clinical trial of pitolisant in patients with PWS. Live! Friday, October 9 @ 3:00 PM ET Register for this session >>