Foundation for Prader-Willi Blog | News

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

On May 1 we are kicking off Prader-Willi Syndrome Awareness Month! Since 2010, PWS Awareness month has mobilized the PWS community to raise awareness and educate others in their communities and across the country. 

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.

You can spread #PWSawareness on Facebook with our 'I Love Someone with PWS' profile frame! Simply go to update your profile photo and select 'Add Frame'. Search for 'prader-willi awareness' and apply the frame. 

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Bringing Joy During COVID-19 With Interactive Activities

With COVID-19 keeping many of us indoors and isolated from our friends and family, we are all seeking new ways to stay connected and spice up our days! A few innovative community members have shared fun activities they have found that allow them to connect with their family and friends with the added bonus of raising a few dollars for PWS research.

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PWS Genome Project Needs Crowdfunding

A new pilot project is seeking funding to map the genomes of 50 people with PWS and integrate that information with the Global PWS Registry data.

This first-ever PWS Genome Project seeks to help researchers better understand differences in PWS symptoms and severity from person to person as well as issues of safety and efficacy of treatments in each person.

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Managing Repetitive Behaviors and Motivation During COVID-19 [WEBINAR]

COVID-19 has turned all of our lives upside down. These times can be particularly challenging for our loved ones with PWS who rely on routines and schedules. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Research Center, shares strategies to manage repetitive behaviors and questions, as well as tips to help motivate your loved one to participate in activities such as at home learning and exercise. Elizabeth has kindly shared the slides from her presentation. Download the slides here.

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2020 FPWR Conference Speakers — Sneak Preview!

You won’t want to miss these speakers at the 2020 FPWR Family Conference this October in Chicago, Illinois.

Inspiration, hope, people who get it — that’s the 2020 FPWR Family Conference! You don’t want to miss joining like-minded game-changers with direct access to the people, knowledge, and inspiration you need to help your child.  

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Top 10 Reasons to Attend the 2020 FPWR Family Conference

The FPWR Family Conference takes place October 1-3, in Chicago, IL. Here are the top 10 reasons you need to be there!

10. Chicago!

Nightlife, live music, culture, and great food are all at your convenience! Shop and explore the Millennium Park and the Chicago Riverwalk; go on a tour of the city or visit the nearby zoo for family fun and outdoor recreation. The options are endless!

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Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]

In this 45-minute video, Sarah Peden, Director of One Small Step and FPWR's Community Development Director highlights the success of the PWS community in raising funds for PWS research. Sarah and parents of children with PWS share how they've gotten involved in supporting PWS research, generating hope for themselves and others. Click below to watch the video, or scroll down to read a transcript of the session.

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FPWR Receives award from the Moriah Foundation to support the development of a Mental Health Guidebook for Prader-Willi Syndrome

The Foundation for Prader-Willi Research is excited to announce the receipt of a financial award from the Moriah Foundation which will be used to support the development of a Mental Health Guidebook for Prader-Willi Syndrome (PWS). Mental health and behavior challenges affect a large percentage of individuals with PWS and their families. These challenges are often under-appreciated and yet the impact on families and individuals with PWS can be profound. 

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Levo Therapeutics Receives Fast Track Designation From FDA for Intranasal Carbetocin for the Treatment of Prader-Willi Syndrome

Levo Therapeutics has received a Fast Track designation from the FDA for intranasal carbetocin for the treatment of PWS. A Fast Track designation will expedite the review of carbetocin so that, if shown to be effective, the product will get to market faster. This is very important for PWS as currently there are no treatments for many of the most challenging symptoms of PWS, such as hyperphagia.

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Saniona reports positive Tesomet Phase 2a clinical results in adolescent patients with Prader-Willi syndrome

In a phase 2a study involving 18 patients with PWS (9 adults, and 9 adolescents) Tesomet reduced body weight and improved BMI and reduced hyperphagia to very low levels. Tesomet appears to be highly efficacious in adult and adolescent patients and was safe and well tolerated in the phase 2a study. Data from the 2a study will provide guidance for the pivotal phase 2b/3 studies now being planned. 

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