Tip of the Week: Coping with behaviors and finding support: A Bright Future Conference

April 19, 2019

I think back to my first Prader-Willi syndrome conferences and remember how much I was embraced by the community and how warmly I was welcomed into this small but mighty group of staff, families, and doctors. The support that I received as a new person stepping into this confusing and sometimes frightening syndrome is why I encourage people to go to any and every conference that you can. You may be a veteran parent or a provider who thinks that you have experienced it all, but consider your first years, days, and minutes and remember how overwhelmed you felt. It was the support of those who had been there that got you through, that gave you hope, and now it is our turn. Our turn to show parents that their lives may not be how they planned, but it will still be a wonderful life. Different, yes, but full of love and pride and really good days.

On Saturday, June 1st, 2019, Latham Centers and the Mac Pact will host a conference in Glastonbury, Connecticut. There, I will be chairing the conference and presenting on behaviors, as will Elizabeth Roof. I often find that the best presentations not only incorporate but focus on questions from the audience. Chances are, other parents, guardians, and caretakers have had similar experiences, or will have similar experiences in the future. Please take this opportunity to share your experiences and to learn from others. We look forward to seeing you there!

We have included a helpful “cheat-sheet” to help manage PWS behaviors as part of this week’s TIP (in Spanish and English!) If you would like to learn more information about these documents, or about our consultation services, please contact Katrina Fryklund at kfryklund@lathamcenters.org. To learn more and register for the conference, please visit: https://pwsabrightfuture.eventbrite.com To get a discounted rate for a room, please visit: http://group.hiltongardeninn.com/LathamCentersInc

 

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi syndrome specialist. She works with Latham’s residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices. Do you have questions for our PWS specialist? Submit your “tip” topics or general questions to TipTopics@LathamCenters.org.