This year’s Prader-Willi California Foundation (PWCF) Annual State Conference will focus on educating families, caregivers, and professionals about the rare and complex genetic disorder, the foundation announced in a press release.
Taking place Oct. 27 at the DoubleTree by Hilton in Sacramento, California, the conference will also emphasize the importance of patients and caregivers connecting with their local Prader Willi syndrome (PWS) community.
Elizabeth Roof, a research associate in the psychology department at Vanderbilt University, will serve as the event’s keynote speaker. She currently coordinates six research programs with patients who have rare genetic disorders including PWS.
Topics to be covered in the conference’s sessions include nutrition, special needs planning, home and community-based services, positive psychology and self-care, behavior management, and exercise. It will also include an overview of the latest PWS research, including studies on behavioral interventions.
Registration fees for PWCF members are $85 for individuals and $150 per couple. Nonmembers of PWCF pay $100, as do PWCF professional members. Non-member professionals pay $125.
A Halloween-themed youth and adult program, taking place at the same time as the conference, will feature games, Zumba, arts and crafts, and a dance party. Fees for that program range from $25 to $50. For those interested, there will also be a meet-and-greet family event Oct. 26.
To register or for more information on these events, visit this link.
PWCF is also an official charity for the 2018 Jet Blue Long Beach Marathon and Aquarium of the Pacific 5k races Oct. 6-7 in Long Beach, California. The nonprofit is encouraging participants to run or walk in the event to raise funds for PWS and increase awareness. To register or for more information, visit here.
PWS is the leading genetic cause of obesity. Symptoms include low muscle tone, an insatiable appetite, and behavior similar to those with autism. According to the Prader-Willi Syndrome Association, up to 1 in 15,000 people have the disease. There is no cure for PWS, but many patients benefit from a supervised diet; in addition, some symptoms can be treated with hormone therapy.
Since 1979, PWCF has supported PWS patients, their families, and the healthcare professionals who serve them with a network of information, advocacy, and other services. The PWCF is supported by donations, grants, membership dues, and events.