Conference reflections: “One of the best things” for PWS caregivers

Latham Centers has a long history of leadership and professional development in the local, regional, and national Prader-Willi syndrome community. Specialized PWS conferences have proven remarkably insightful to staff at Latham; conferences are a catalyst for continued education and opportunities to connect with people from around the globe. Earlier this year, staff from both our Children’s Services and Adult Services programs attended the Prader-Willi Alliance of New York Conference in Binghamton. The conference was well attended and included sessions ranging from nutrition and wellness to changes in legislation. At the conference, Patrice Carroll, our Director of PWS Services, presented on relationships and dating. Her session included a discussion of the vast differences between friendships and romantic relationships, as well as the difficulties parents/guardians face when having conversations about healthy relationships. Patrice’s presentation tackled the difficult topic of fantasy relationships, including those with no basis in reality versus some basis in reality.

Although PWS impacts an estimated 1 in 15,000 people (statistic cited by PWSA (USA)), many people in the community of medical and educational professionals, parents and guardians, and advocates haven’t yet had the experience of attending a conference. The professional PWS conferences which focus on the syndrome have proven life-changing for so many of the attendees. A parent of one of our students once told me, “Attending conferences is one of the best things we did together when my son was growing up.” I echo this sentiment and encourage all families of children and adults with Prader-Willi to participate in regional or national PWS conferences.

Latham Centers will continue to lead through involvement in conferences, and we’re looking forward to attending the 2018 Prader-Willi California Foundation Conference on October 27th in Sacramento.

Submitted by Katrina Fryklund, Director of National Outreach

Photo collage includes group photos at recent PWS conferences; a slide from a conference presentation; and Latham students at a special event.