2014 Research Conference Wrap Up

"I am blown away by [the FPWR Research Conference]. It has been an honor and a privilege to come and present. FPWR is an amazing foundation. The families I met are just the most wonderful people.The spirit amongst you, the motivation, and the energy is totally infectious. I just feel like I want to do research on PWS for the rest of my life, because of this great foundation, and all these amazing families. "— Dr. Christian Schaaf

Over 180 parents, researchers and care providers were in attendance at our 2015 FPWR Research Conference, The Time Is NOW.  Participants mingled with families and shared stories and laughter while learning the latest in PWS Research during this two day event November 15-16. The conference began Friday evening with a special gathering of FPWR Leadership Circle members and presentations by Dr. Theresa Strong, Director of Research Programs and Dr. Tom Hughes, Zafgen.

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Friday's Meet n' Greet allowed families to network, share stories and get to know one another before Saturday's research presentations.
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Families learned about current research into PWS iPS cells, Magel 2, autism as it relates to PWS, and more on Saturday when top PWS investigators in the field of PWS research presented their work.
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Saturday evening we celebrated our year's successes which include funding 17 projects as well as raising over $3,000,000 for Prader-Willi research; and we acknowledged 4 key contributors: Volunteer of the Year: Becky McWilliams Host of the year: Melissa Demand and Angela Frazier Rookie of the Year: Laura Miesle Host of the Decade: Tanya Johnson
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Parents were given the opportunity to meet with their age level groups Sunday morning and representatives from 4 PWS clinical trials were present to answer questions from parents and share trial information. Slides from clinical trial presentations are available:

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Thank you to our group moderators: Dana Capobianco (0-2), Amber Harkin (2-4), Ali Shenk (4-6) and Jessica Howard and Shawn Johnson (Grandparents).  

What are participants saying about the event?

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"This conference is not to be missed!"  -- Joe Olivacz
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"I can't wait until next year!" -- 
Blair McWilliams  
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"This is why we never give up. Each one of these crazy, amazing, hilarious, people has a child living with pws. And each one of them is overflowing with hope and determination! I love them each like they've been a best friend I've known my whole life. There's just nothing better than a community of people who see a challenge and rise to the occasion and do it with a smile. I love you guys! I'm so grateful for each one of you! ‪#‎fpwrconf‬ (there are a few scientists in there too, but our kids are kind of their kids now too)"  — Sarah Peden, participant

Thank you Epic Photography for capturing these precious moments!

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Mark your calendars and join us September 25-27, 2015 in Austin, Texas for our 2015 FPWR Research Conference! You will not want to miss it!

     

Topics: Research

Susan Hedstrom

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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.

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