FPWR Blog

Once She Sets Her Mind to Something, Nothing Can Stop Her!

A special contribution by guest blogger Alice Shapley

Our beautiful and amazing 7‑year‑old daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the role of hard work—something that I believe many PWS families know quite, quite well.

Topics: Stories of Hope

FPWR Announces First Round of 2020 Grant Awards for PWS Research

 

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2020 totaling $912,251. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $14,000,000 to research since 2003.

Topics: Research

Practical Tips for Behavior Intervention At Home

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives advice on how to manage behavior challenges related to Prader-Willi syndrome during this stressful time and answers questions from our community members around the world. Download the slides here.

Topics: Research

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. 

Topics: News

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.

Topics: News

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.

Topics: News

Strategies for Managing PWS Related Behaviors During COVID-19

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives advice on how to manage behavior challenges related to Prader-Willi syndrome during this stressful time and answers questions from our community members around the world. Download the slides here.

Vision and Prader-Willi Syndrome

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness, and strabismus, which is when the eyes don’t look in the same direction at the same time (commonly known as ‘cross-eyed’). The frequency of nearsightedness in the Global PWS Registry (41%) is in line with the general population. However, the prevalence of strabismus (40%) is significantly higher than the general population (<5%). Farsightedness is also more prevalent in PWS Registry participants (25%) than in the general population (5-10%).

Topics: Research

At-Home Learning Strategies for Students with PWS During COVID-19

Most of us are not trained educators, yet with COVID-19 closing schools around the country and many of us are facing distance learning for the remainder of the school year. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Research Center, shares strategies and tips for teaching your child with PWS at home. Elizabeth has kindly shared the slides from her presentation. Download the slides here.

PWS Clinical Trials Alert

In addition to our regular clinical trial updates below, we have two clinical trial announcements to share with you. 

1. Millendo has shared that results from the Zephyr clinical trial do not show the significant improvements in hunger that we had all hoped to see and Millendo has discontinued the livoletide program for PWS. Learn more in our blog >>

2. Due to COVID-19, Harmony has delayed the start of their Phase 2 study of Pitolisant in PWS. The company does intend to move forward with the study when physical distancing measures allow. Read Harmony's letter to the community >>

Topics: Research

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