International PWS Conference highlights from our Admissions Team

September 24, 2021

Latham Centers’ Admissions Team recently participated in a virtual workshop focused on PWS hosted by the International Prader-Willi Syndrome Organisation (IPWSO)*. The two-day session focused on research, the progress of the past thirty years, and the progression necessary in the next thirty years, noted Director of National Outreach Katrina (Fryklund) Kozak. “While impossible to detail all that was magnificent from this conference, we’d like to share a few key highlights, including this quote from our Director of PWS Services, Patrice Carroll, who serves on the IPWSO Professional Providers Caregivers Board (PPCB)”:

“When the PPCB first made the decision to cancel the Berlin conference and go virtual, we were worried that we would not be able to convey the spirit of IPWSO through our computer screens. Our conferences have always been in person, where we were able to gather as a community with one vision: to improve the quality of lives for people with PWS. It was encouraging to see all of the leaders and experts in the field of PWS come together with the same passion, energy, and ingenuity that I have seen year after year at in-person conferences. I am the newest member of PPCB, and with over 20 years of experience, I am still the least experienced member of the group. The commitment of the members of IPWSO continues to impress me, with members coming back year after year – never failing to show up and work even harder than they did the years before. We are hopeful that we will be in person next year, but even if we are not, I will be looking forward to gathering in whatever way we can to improve the lives of people with PWS.”

During the 2021 Virtual Workshop, discussions included:

  • Findings that some of the most important advances over the years have been early diagnosis, international communication and education, virtual connections, improvements in diagnosis, growth hormone therapy, and healthcare opportunities.

  • Attendees’ hopes to see development in these and other areas: worldwide early diagnosis, stopping the insatiable appetite/food-seeking, more acceptance, appropriate peer groups and educational support, and the overall understanding that PWS is a medical disease and not a behavioral option.

  • The topic of underserved countries and families, and the importance of one dedicated platform, contact with rare disease groups, universal messaging and education, and utilizing and understanding resources within different countries (whether or not they are world leaders).

  • The strengths of the community – including technology and telehealth, expertise and commitment to the mission, a hopeful future, improving the lives of the people with PWS by listening to them, and more.

Susan LaPlant, Admissions Officer, said it was “amazing to see this community look to the future for ways to continue to reach the international community. IPWSO is a beacon of hope for many international communities, bringing hope and information to families in a time of need.

Brittni Kliment, Director of Program Marketing and Admissions, added, “What hit home for me was the creative and outside-the-box discussions surrounding things such as facial recognition to provide doctors, families, and university researchers with the information they need to successfully educate and care for an individual with Prader-Willi syndrome. Although we are certainly not there yet, there is talk about how to make such things happen. Our team looks forward to becoming more involved with IPWSO to raise awareness and help those underserved countries receive the resources available.

 

*More about IPWSO: The International Prader-Willi Syndrome Organisation is a resource for families, caregivers, and people with PWS around the world with a dynamic presence and large scope. Since 1991, IPWSO has supported national PWS associations, as well as people with PWS, their families and the professionals who work with them. Their vision is a world where people with PWS and their families receive the services and support they need to fulfill their potential and achieve their goals. IPWSO is working to achieve this goal by uniting the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS” (https://ipwso.org/).

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