Industry News

PWHO Wraps up PWS Awareness Month

PWHO spent the month of May raising awareness for Prader-Willi Syndrome by sponsoring various events that raised over $700. This year’s theme was Unsung Heroes and events included “A Night at the Mansion,” Program Coordinator Penny Wars, Jeans for Genes Day, Best Pho-to Contest, PSW Trivia, and Best Hero Stories. Marguerite Rupnow, National Director of Admission and Advocacy, said “Our residents and staff are the everyday Unsung Heroes of PWHO. It is a privilege and honor to work with each and every one of them. Thank you for making PWHO an amazing place to work!”

PWSA-USA Celebrates A Successful National Conference

The 2017 PWSA (USA) National Convention was an overwhelming success, and we want to thank YOU for making it great!

Over 700 individuals travelled from across the country to join family, friends, medical and school professionals, researchers, and professional providers to exchange information and ideas, a shared expression of hope and solidarity across the PWS community.

Thank you to our major sponsors – Paradise Cove Platinum – Casting for a Cause Fishing Tournament, Coral Reef Diamond – Prader-Willi Homes of Oconomowoc and The James Hervey Johnson Charitable Educational Trust.

In addition to learning from PWS experts and leading voices in the PWS community, attendees enjoyed several relaxing and fun activities, including the annual welcome reception and the general and Youth and Adult Program (YAP) galas. Many also took advantage of the Caribe Royale’s vast amenities, enjoying family time at the pool, arcade, or spa, and still others came before or stayed after the convention to enjoy Orlando’s most popular destinations. It was a busy, fun, and transformative week for everyone!

Once again, thank you for joining us at the 2017 National Convention. We hope yours was a great experience, and that you’ll share what you learned with everyone in the PWS community. We can’t wait to see you again at the 2019 PWSA (USA) National Convention!

Check out the PWSA-USA website for more highlights:


PWSA-USA National Conference 2017
Professional Provider Day Highlights
submitted by Barb Butler, Development & Outreach Director – PWHO

Professional Provider Day was held on Thursday, November 16, with 75 professionals in attendance.

Special thanks to our co-chairs and leaders of the day: Patrice Carroll, MSW, Director of Services, Latham Centers; and Mary Kay Ziccardi, Regional Director, The MENTOR Network.

Tony Holland, MD, psychiatric advisor for UK PWSA and President of the International PWS Organization IPWSO, kicked off Provider Day with a presentation on mental health and problem behaviors in PWS, from assessment to intervention. His three objectives were: to provide a framework that enables a better understanding of behavioral and mental health problems; to consider how understanding can lead to informed interventions; and to consider the limitations of knowledge and how research seeks to address such gaps.

Next, the team from AME Community Services, Inc. – Lynn Garrick, RN, nurse consultant and program director and Falone Aced Schulz, Program Coordinator – spoke on managing rectal picking in the residential setting. They offered the group practical daily support tips for staff to serve clients in their group homes.

PWSA-USA favorite B.J. Goff, Ed D, then led a lively discussion on families and providers working together. She shared the two major concerns of parents who place a child in residential programs – communication and staff training. In addition, B.J. provided handouts on ways for providers to work with families in the concern areas and offered up dos and don’ts for improving parent-provider relationships.

In the afternoon, the Prader-Willi Homes of Oconomowoc team of Marguerite Rupnow, Director of Operations, and Barb Butler, Development & Outreach Director, discussed G.astronomy, U.niform, T.ransformation – How to implement the Science of Good Eating into our Residents’ diet. The speakers shared their company’s journey to improve the diet and nutrition of the meals at PWHO. The presentation spotlighted recent research on gut health and then focused on implementation of new menus, meal prep, food ordering, serving utensils and a team nutrition binder that are used in all the homes for consistency.

Kayla Cox and Gina Sheehan of Latham Centers wrapped up the speaker presentations. Their topic – Transforming a Residential Program with Positive Behavioral Supports – included data and testimonials on the implementation of their program and its goal of developing a behavior management system to understand what maintains an individual’s challenging behavior.

The afternoon closed with roundtable group discussions on key topic areas that have been most requested by providers. Some of the topics included: The New Workforce, Challenges with Food, Aging, and social media. Table facilitators gave a report from the day’s discussions.