2020 Conference Whats Happening

 

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 
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Nutrition

 

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
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Virtual Conference Covers (1)

 

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 
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2020 Conference Desconstructing Anxiety

 

 

 

 

 

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 
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2020 Conference Trial Panel

 

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 
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Social Functioning

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 
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2020 Conference New Parents

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 
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2020 Conference Levo Results

 

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 
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2020 Conference Fireside Chat

 

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
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Orthopedic Challenges in PWS

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 
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Grandparents connect

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 
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2020 Conference Soleno Results

 

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
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Take Action for Research

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
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Acceptance and Commitment Training for Parents

 



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 
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Insurance and Estate Planning

 

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 
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Pitolisant for PWS

 

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 
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