Foundation for Prader-Willi Blog | News

Spring Cleaning? Put Your Efforts Towards Supporting PWS Research!

Looking for a quick FUNdraiser this spring? Grab a few friends and de-clutter for donations! Here's how to host a spring cleaning fundraiser for PWS research in 4 easy steps:

1. Ask supporters to donate items to your “garage sale” that they’d ordinarily give away or sell. Set up a virtual fundraising page with all the details of your sale and ways people can get involved. Here are some tips for getting your community, friends, and family involved:

  • Offer to pick up donated goods, or set a designated time for drop-off at your home
  • Ask friends to volunteer to help you set up the night before your sale and / or help on the day of the sale

Topics: News

Dr. Elisabeth Dykens Receives Rare Impact Award From National Organization for Rare Disorders

FPWR congratulates Dr. Elisabeth Dykens, who was awarded last night with a Rare Impact Award by the National Organization for Rare Disorders.

Dr. Dykens may best be known in the Prader-Willi syndrome (PWS) community for developing the Dykens Hyperphagia Questionnaire, an assessment of the food-seeking behaviors common among individuals with Prader-Willi syndrome, which has become the gold standard for measuring outcomes in PWS clinical trials.

Topics: News

First Study Site Announced: DCCR for PWS Hyperphagia, Phase 3

Soleno has announced the opening of their first clinical trial site for a Phase 3 study of DCCR to measure the drug's efficacy for treating hyperphagia in PWS. That site is Seattle Children’s Hospital.

Topics: News, Research

FPWR Announces First Round of 2018 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2018 totaling $615,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $10,000,000 to research since 2003.

Topics: News

Phase 2 Study Announced: Tesomet for PWS Weight Loss, Hyperphagia

Saniona has announced it will continue its phase 2 study of Tesomet for Prader-Willi syndrome. Saniona is developing Tesomet as a potential treatment for PWS patients to help with weight-loss and reduce hyperphagia (excessive hunger). The study, which had been divided into two parts, was paused while data from the first half of the study was analyzed.

Topics: News

May is #PWSAwareness Month | We Have Your 2018 Awareness Resources

Visit our 2018 PWS Awareness month page on the FPWR website for inspiration, educational resources and fundraising ideas to help you with your awareness activities! And don't forget to sign up for our PWS Awareness Month emails to receive a daily PWS fact that you can share to help build awareness.

Topics: News

Unique Art Auction Benefits PWS Research

 

20 unique paintings are available to the highest bidders in a unique art auction benefiting the Foundation for Prader-Willi Research (FPWR).

Topics: News

Top 10 Reasons to Come to the FPWR Conference This Year

The FPWR Family Conference takes place October 4-6, 2018, in Las Vegas, NV. Here are the top 10 reasons you need to be here! 

10. Vegas!

Nightlife, shopping, entertainment, and relaxation are all at your convenience!  Shop and eat your way around the Las Vegas strip for nightlife and entertainment; or visit the nearby Red Rock Canyon for breathtaking views and outdoor recreation. Catch one of the many concerts and shows offered in Las Vegas.  The options are endless! 

 

Topics: News

Brain Tissue Donation: A Crucial Way to Advance PWS Therapies

FPWR is partnering with Autism BrainNet to collect and study post-mortem brain donations. Through  this partnership, we aim to raise awareness about the importance of post-mortem brain donation, streamline the donation process for families, and enhance the collection and distribution of high-quality tissue to researchers. 

 

 

Topics: News

Topics: News

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