Time & Breakout ID

Title and Description

Presenter

Code

9:00 – 10:15 am

Opening Ceremonies – Key Note Speaker

By highlighting his life story, captured in the movie about his life, "Music Within", Richard focuses on leadership not by what we know, but rather who we are and what we do. With every interaction you have the opportunity to inspire belief, action and change. He will inspire you to tap into your music within to make a difference and to build a legacy for the future.

Richard Pimental (Keynote Speaker)

(E)

10:30 – 11:45 am

B1A

An Overview of Prader-Willi Syndrome - What every parent should know

Dr. Dan Driscoll MD, PhD

[E]

B2A

Prader-Willi Syndrome:  From the Orthopedist’s Viewpoint- Discussion on the orthopedist’s role in children with P-WS.  Includes scoliosis, hip dysplasia, osteoporosis, other deformities, and developmental delays.

Harold VanBosse  MD

[A,B]

B3A

The Music Within – Finding Potential in the Workplace

Richard Pimental shares his insight and message on what can be done to work with employers of persons with PWS.  Richard was one of the co-authors of the Americans with Disability Act.

Richard Pimental (Keynote Speaker)

[E]

1:30 – 3:00 pm

Recap of Scientific Conference
Professionals share a brief overview on current research and topics discussed in the Scientific Conference. 

Merlin Butler MD, PhD, Dan Driscoll MD, PhD, Janalee Heinemann MSW

[E]

3:15 – 4:30 pm

B1B

Oral Motor/Speech Therapy

Come learn more about the impact of poor muscle tone on oral motor and speech development in the person with PWS.  You will also gain suggestions on what you can do to assist with these concerns. 

Stacey Hiller

[E]

B2B

Strategies to Minimize and Treat Skin Picking
Experts share various strategies that may be tried to help to decrease the challenges of skin picking behavior.

Greg Cherpes MD, Gus Ludwig OTR, Denise Buenzili RN

[B,C]

B3B

“The Hat Dance Hoedown”

Wild Willy and Silly Lilly will be talking about all the different hats parents and caregivers wear. They will discuss how all those roles can affect their lives. Come and be encouraged and inspired as you find out it is OK to make time and take time for yourself! 

Derek and Natalie Snitker

[B,C]

Time & Breakout ID

Title and Description

Presenter

Code

9:00 – 10:15 AM

 B1C

Sensory Integration for the Person with PWS
Treating the behavioral and motor challenges of PWS through sensory integration and motor activities. This lecture will also discuss conservative management of scoliosis and give families tools that they can use now and in the future with their children or clients with PWS. 

Janice M. Agarwal PT

[E]

 B2C

Making the IEP Work for You
The IEP is the most important tool created in helping the student with PWS in the school setting. Education consultants for students with PWS will help to highlight key points.

Mary K Ziccardi, BJ Goff Ed.D

[B, C]

 B3C

Are We Ready for the Approaching Medical and Psychosocial Needs of Our Maturing Adults with PWS?
A panel of experts begin the discussion of what needs our aging adults with PWS are beginning to face and what can be done to help support these needs.

Liz Moser-Sadewicz, Marta Muller MD,
Kim Tula, B.S. and Anne Felden, Ph.D.

[C]

10:30 – 11:45  

B1D

Beyond the Star Chart – Dr. Gourash and Dr. Forster will share insights and practical suggestions as parents begin to learn positive parenting techniques and troubleshooting ineffective behavior plans. For all ages. Both physicians are international experts in PWS.

Linda Gourash, MD Janice Forster, MD

[E]

B2D

Making a House a Home: Models of Support
Residential providers from agencies across the nation share different models they are using to support the adult with PWS.
 

Jackie Mallow, Mary Kay Ziccardi, Jan Bradely, Steve Drago and Jeff Covington

[C]

B3D

Successful Social Experiences - A panel comprised of professionals and a parent will share ideas and experiences in how they have created successful social experiences for children and teens with PWS. 

Josh Lapin MSW, Vicki Oimoen, Mike Larson

[B,C]

11:45 – 1:00

(Optional lunch time session)

Sharing sessions

No need to select before arriving to conference.  Sessions will be highlighted in the conference program.

·                Adult/Transition (21 and older)

·                Teen/Young Adult (13 – 21)

·                School Age (Ages 6 – 12)

·                Infants/Toddlers (Birth – 5 years)

·                Grandparents

·                Professionals

[E]

1:15 – 2:30 pm

B1E

Behavior Panel with Gourash, Forster and Agarwal Dr's Forster and Gourash experts in PWS behavior and Janice Agarwal, expert in sensory integration for children with PWS, discuss issues faced by audience members to describe ways to prevent and manage the behavior challenges often seen in older children, teens and adults with PWS.  Q & A.

Linda Gourash, MD
Janice Forster, MD

Janice Agarwal, PT

[B,C]

B2E

Fitness:  Making it Fun

So many times we find workouts and fitness routines to grow boring after a short period - especially for our children. Vicky will share some ideas on how to incorporate fun into those routines or to get your kids active without them realizing they are working out!  

Victoria Moerchen PT 

[E]