2018 PWS Research Symposium and Family Conference - We Can, We Will!


2017FPWRindy-2349.jpgThis October, parents, caregivers and medical professionals from across the country will once again be coming together to connect, learn, and be inspired at the Foundation for Prader-Willi Research’s Annual Research Symposium and Family Conference: We Can, We Will. The two-day family conference brings together over 200 members of our PWS community allowing you to network with researchers, question the experts and brainstorm with other amazing parents who are committed to eliminating the challenges of PWS.

To arm you with the latest strategies and to share what has been learned in recent behavioral research studies, we have invited several of the top experts in the world to speak on the topic of behavior. Attend a panel discussion with behavioral experts: Anastasia Dimitropoulos, Elizabeth Roof, Kate Woodcock and Lauren Roth, then choose among several breakouts focusing on: 

  • Social Functioning in PWS
  • ABA Therapy
  • Task Switching / Transitions

Also, back by popular demand, we have sessions on:

  • Nutrition 101 with Melanie Silverman
  • Speech Therapy 
  • Highlights from the PWS Research Symposium
  • Updates and information on PWS Clinical Trials
  • 2 sessions just for parents of newly diagnosed children
  • Specialty sessions for parents of children with Schaaf-Yang and USP7 syndromes
  • And More!FPWR-PWS-conference-2017-dads.jpg

With premier experts in their fields and the backdrop of Las Vegas, this year’s conference promises to be an event to remember! Register soon! We have a killer deal on rooms ($139/night) but they are limited, and you will only get the discount code after you register for conference! To learn more and register, please visit www.fpwr.org/events



Nichols Presents at Scientific Day.jpg

Can’t get enough of the science? Come a day early for our PWS Scientific Symposium, Thursday, October 4th.



Hear What Past Conference Participants Say ...

“We had a great time at our first Prader-Willi conference. We learned a lot and best of all we met some great new friends going through the same struggles we are. Can't wait for next year!”  —Blythe and Travis Gregg, SCFPWR-PWS-conference-2017-moms-with-babies.jpg

“The future looks FULL of hope and promise. I feel alive again. A spark and drive have returned. I want the best for Makenna and all those living with PWS. The immediate bond that comes with spending time with these other parents who "get it" feels good. I met many for the first time but feel I have known them for years.” —Lisa Lamb, AZ

“Great weekend discovering the latest and greatest in PWS research. The scientific and medical communities are well on their way to helping our loved ones live an independent life.” —Rachael Fischer, CO. 


Register Now!


Win a Trip to the 2018 Conference

Fundraisers who create an FPWR fundraising page before August 1, 2018, will receive 1 entry for every $500 raised towards a trip to the FPWR conference in Las, Vegas, NV!  The drawing will take place in August 2018. The winner will receive up to $750 towards the purchase of one round trip flight to the conference, two nights stay and one conference registration! Learn more about this opportunity here.




Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.