Foundation for Prader-Willi Blog | News

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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FPWR 2019 Conference Speakers Announced

You won’t want to miss these speakers at the 2019 FPWR Family Conference this October in New Orleans, Louisiana.

Are you ready to join like-minded game-changers with direct access to the people, knowledge, and inspiration you need to help your child at the lowest price of the year?

Want to take home tangible ideas that you can work on with your child? 

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ConSynance Therapeutics, Harmony Biosciences Join PWS Clinical Trials Consortium

The Foundation for Prader-Willi Research is pleased to announce the addition of ConSynance Therapeutics and Harmony Biosciences to the PWS Clinical Trials Consortium.

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PATH for PWS Study Highlighted by National Organization for Rare Disorders

In celebrating five years of success with its comprehensive patient registry, the National Organization for Rare Disorders (NORD) has called special attention to FPWR’s PATH for PWS study.

The study stems from improvements made to the NORD registry that allow greater collaboration and engagement among stakeholders and experts to accelerate the pace of research for rare conditions.

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Meet Lisa Matesevac, FPWR's PATH for PWS Study Coordinator

FPWR is happy to announce that Lisa Matesevac has joined our team as our coordinator for the PATH for PWS Study, facilitating families’ involvement in the study. PATH for PWS will help us understand the medical complications that people with PWS experience, and what factors can decrease or increase their risk. 

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