Foundation for Prader-Willi Blog | News

Dr. Theresa Strong Joins Scientific Advisory Board of Saniona

 

FPWR works closely with several clinical trial sponsors in order to help companies understand the medical needs and challenges of PWS, provide input into study protocols and educate the community about trial opportunities. Most recently, FPWR Director of Research Programs, Dr. Theresa Strong, was invited to participate on the Scientific Advisory Board for Saniona, a therapeutic company working on a new treatment for hyperphagia in PWS.  Saniona will leverage the expertise of its Scientific Advisory Board as it develops its Phase 2b and 3 studies of Tesomet which are planned to take place in both the U.S. and Europe over the next 2 years.  Read below for their recent press release.

 

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

Visit our 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.

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PWS Clinical Trials Consortium Meets with FDA for a Critical Path Innovation Meeting

The PWS-Clinical Trial Consortium (PWS-CTC) met with FDA on November 19th for a 90-min session, to discuss the progress made in the last three years to overcome clinical trial challenges in PWS. With an increasing number of clinical trials in PWS, it is a critical time for the FDA and industry partners to fully understand the unmet medical needs and the impact that PWS has on those with the disorder and their families.

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Latest PWS Research To Be Presented At 2019 Conference

We cannot wait for this year’s FPWR family conference, and what would an FPWR conference be without research!

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Getting the Right IEP for Your Student With PWS: Lessons from a Principal

Are you a new parent to the Individualized Education Plan (IEP) process and seeking to understand the journey ahead? Or a veteran to the IEP process and seeking tips and strategies to ease the experience?

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From the CEO's Desk: Working Together to Grow Our PWS Research Investment

Our team recently presented a summary of our 2018 programs and 2019 plans to the FPWR board of directors and, in reflection, 2018 was a great year of progress in PWS research!

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PWS Occupational Therapy: Don't Miss These Conference Sessions

We’re looking forward to this year’s FPWR Family Conference, and I hope you will join me at two informative sessions with Ashley Waguespack and Jessica Boudreaux, of Sensory Solutions. 

Ashley and Jessica have more than 20 years combined experience to the field of pediatric occupational therapy. They are both certified in sensory integration and have the unique perspective of looking at children from a holistic framework.

Ashley says: In each treatment session, we are assessing and reassessing the whole child and seeing how we are best able to support the child to be successful and achieve their highest potential.

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The Right Session for You: FPWR Conference 2019 Preview

Inspiration, hope, people who get it—That’s what the 2019 FPWR’s Family Conference is!

You don’t want to miss joining like-minded gamechangers with direct access to the people, knowledge, and inspiration you need to help your child. Hear the latest in PWS research from experts in the field and engage one-on-one with researchers who have a deep interest in finding treatments for our loved ones with PWS.

And remember, we have something for YOU because this conference is for YOU.

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A Ray of Hope: Families Share Why They Love the FPWR Conference

Attending a conference means being around people who get itthey understand the journey you have been on with your child, personally, and with the world. It’s like seeing your family when you attend the FPWR Family Conference. Everyone, whether a new parent or seasoned parent, are there to support one another and lift each other up. Don’t believe us? Then hear what attendees from our 2018 conference had to say:

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Top 10 Reasons to Attend This Year’s FPWR Family Conference

The FPWR Family Conference takes place October 3-5, 2019, in New Orleans, LA. Here are the top 10 reasons you need to register now and be here!

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