A special contribution by guest blogger Lisa Matesevac.
Welcome to the ATL! We are thrilled that our city will host the annual Foundation for Prader-Willi Research Symposium and Family Conference in September 2024! Together with my family and the Georgia Association of Prader-Willi Syndrome, we look forward to welcoming you and hope you enjoy the taste of southern hospitality.
As the parents of a 17-year-old with PWS, we have reaped the benefits of belonging to a well-connected community of families like ours eager to learn from one another. Shortly after birth, with an unexpected diagnosis shadowing our future, we connected with FPWR as we desperately sought to immerse ourselves in information about the syndrome. We quickly learned that research was the bright, shining beacon of hope we needed.
Attending the conference means being in the same room with the brilliant researchers responsible for changing the landscape of our lives and learning about the latest research alongside other parents who have the same hopes and dreams as us—a future where the three little letters P, W, and S mean something more than what we are told on diagnosis day. It gives me hope that what lies in the past does not define our future.
So much has changed about what we know about PWS, in large part due to the incredible research funded by FPWR.
In 2006, when we first came on the scene, we were thankful for the opportunity to have growth hormone as an approved treatment for PWS. The first clinical trial has had a momentous impact on our community. As a result of years of research, we now have multiple clinical trials happening that focus on a wide range of needs, including hyperphagia, sleep, and behavior.
For the first time ever, our small but mighty organization is committed to running a first-of-its kind clinical trial, VNS4PWS, aiming to treat temper outbursts in our loved ones. But the invaluable work doesn’t stop here, as we strive for solutions for all of the most challenging aspects of PWS. Attending the conference means having a front-row seat to learning how these trials are changing the landscape of what it means to live life with PWS.
Many overwhelmingly positive feelings can be described by those who attend the conference. For me, I feel energized. I am at my best when I have a plan of action, and speaking directly to the researchers leaves me feeling empowered.
Equally as important, I am excited to spend time with my people, the ones with whom a glance can say it all and a laugh can shatter the fears, forge a lasting bond, and bring peace to my soul.
Have no fear if you are a newcomer! We are a mighty collection of rare and unique individuals brought together by something we never saw coming but nonetheless have in common. Every new face is an opportunity for connection, learning, stretching, and support. Here, you too will find your people.
I hope you leave our city having forged new friendships, quieted your fears, and bolstered your hopes and dreams.
