More than 800 people are expected to converge on Orlando, Florida, in late October for the 35th National Convention of the Prader-Willi Syndrome Association (PWSA).
The event, to take place over a four-day period at the Caribe Royale Hotel, is divided into three segments: a two-day medical and scientific conference (Oct. 23-24); a professional providers conference (Oct. 24); and a general conference (Oct. 25-26) for parents, grandparents, siblings, and caregivers of people with Prader-Willi syndrome (PWS).
Convention coordinator Jackie Mallow, who’s been with PWSA for 30 years, said the theme of this year’s gathering is “Unmasking the Possibilities.”
“We’re taking a look at where we’ve come from, and where we’re headed. What we thought was possible 15 years ago, and even five years ago, has definitely changed with regards to research,” Mallow told Prader-Willi Syndrome News, which will cover the conference on-site, in a phone interview from Wisconsin.
“Until recently, people with Prader-Willi were only living until the age of 14, and now they have a normal life expectancy, as long as they have the appropriate best practices in support, meaning family, educational and medical support,” Mallow said. “The complexity of this syndrome requires families to have continuity of services from all angles.”
About one in 12,000-15,000 people have PWS, a genetic disorder that typically causes low muscle tone, short stature, incomplete sexual development, cognitive disabilities, behavioral problems, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity.
The disease — the most common known genetic cause of obesity — affects boys and girls of all races and ethnicities.
Organized in 1975, the Florida-based PWSA held its first convention four years later in Minnesota, and is a member of the International Prader-Willi Syndrome Organization (IPWSO).
Another nonprofit group, the Foundation for Prader-Willi Research, is holding its own symposium and family conference Oct. 3-5 in New Orleans, Louisiana. A third event, the 10th IPWSO Conference, will take place Nov. 13-17 in Havana, Cuba.
Registration for PWSA USA’s general conference costs $250 per person, which is about a third of the actual cost, according to Mallow. Participants will come from across the United States as well as other countries, including Great Britain, Israel, and India.
“The funds we raise go toward research as well as family support,” Mallow said. “We have three people on our crisis support team — a nurse and two behavioral specialists — which connect families with in-state resources.”
At the conference, several scientific abstracts related to PWS will be presented. In addition, participants will hear from keynote speaker Rick Guidotti, an award-winning photographer and founder of Positive Exposure.
Other speakers include a mother-and-daughter team, Kristi and Justice Faith Rickenbach, on how PWS has affected their lives. Talking about the future of Prader-Willi research will be Tony Holland, PhD, of IPWSO and Jennifer Miller, MD.
In addition, presentations will be given by licensed psychotherapist Lizabeth Moser and psychologist Larry Genstil.
Moser, has a master’s degree in social work from the University of Wisconsin-Milwaukee and completed her clinical field work at Milwaukee’s Waukesha Memorial Hospital. She’s been working with Prader-Willi patients since 1997. Genstil, who has a PhD in psychology from the University of Southern California-Los Angeles, moved to Israel in 1986, and currently runs a large group home in Jerusalem for people with PWS.
Workshops on specific topics will include the following:
- “Muscle, Bone, Balance & Tone” by Harold van Bosse, MD, and physical therapist Janice Agarwal.
- “Siblings” by Ashley Loker, Jade King, and Molly Bruckner
- “New Federal Rules Impact Your Future,” by Lisa Graziano
- “Journey of the Heart: A Grandparent’s Role” by Steve and Nancy Burlingame
- “Using the Science of Resilience to Thrive as a PWS Family” by Emily Felt
- “Understanding Research 101” by James Loker, MD
- “The Challenges of Adolescence: Keeping Your Child Healthy” by Linda Gourash, MD
- “Legal Planning and Guardianship Protection” by attorney Lisa Thornton
- “Practical Behavioral Solutions” by Cindy Szapacs and Amy McDougall
- “Aging: Cognitive, Physical and Social Health” by Jackie Mallow, Lizabeth Moser, and Larry Genstil
- “Sleep Disorders in PWS” by Althea Robinson-Shelton, MD
- “Psychiatric Medications” by Janice Forster, MD.
About 115 people with PWS are registered for the event, which also includes a Young Infant Program (for those under 1 year old); a Youth & Infant Program (ages 2-6); a Youth and Adult Program (7 years and up), and a Sibling Program.
For more information, contact Jackie Mallow at [email protected] or 941-487-6726.