FPWR Blog

Managing Challenging PWS Behavior at Home and School: 2019 Conference Highlight

Need help with behavior management? Struggling with behavior at school?

Topics: Behavior

Our Challenges Are Opportunities To Be Better People, Says PWS Mom

A special contribution by guest blogger Laura Achlabach

Laura shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

Topics: Research

'My Life Was Enriched By Having a Sibling With PWS'

A special contribution by guest blogger Deb Cooper

Deb shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

PWS Clinical Trials Alert: July 2019

Several NEW PWS trial opportunities are now available. FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely. Some trials are testing new drugs while others are intervention (non-drug) or natural history studies, like the PWS Weight Study described below.

Topics: Research

Anyone Anywhere Can Raise Funds to Speed Research for Prader-Willi Syndrome

Community members from coast to coast are finding easy ways to make supporting PWS research FUN! A 1-mile kids race, a friendly kickball tournament, an uncle's bike ride across America, and an individual Ironman are just four examples of our community rising together to raise critical funds for PWS research while doing what they love!

Topics: News

Uncle Paul Cycles America to Build Awareness of PWS

Paul Golub’s 30th anniversary working for Walmart in Athens, GA, was just around the corner, when his upper management approached him and asked what he would like to do to celebrate the occasion. After spending some time thinking about it, he remembered something that his brother Larry had suggested about 5 years back — that they should ride their bikes coast to coast someday. 

Topics: Stories of Hope

Why I Believe We Are Entering a Golden Age of Medicine

In 1869, scientists isolated DNA for the first time. In 1953, they identified its double-helix structure. In the late 1970’s bone marrow transplantation was introduced, and entire immune systems (genes) were replaced as means to cure some blood cancers. In 2003, the human genome was sequenced.  FPWR’s own director of research programs, Theresa Strong, worked on that project with Dr. Francis Collins.

One milestone after another has been reached, giving us a deeper understanding into how our bodies and minds are constructed.

Topics: Research

PWS Mindfulness and Meditation Trailblazer Singh To Speak at 2019 Conference

The ability to regulate emotions is an essential skill for a happy life, and for many of us this can be challenging to accomplish! When left unmanaged, high levels of stress can lead to both mental and physical ailments which is why learning coping strategies is important for long term health.

Topics: News

Camaraderie & Joy : Walking in Washington, DC

I recently had the joy of attending the One SMALL Step walk in Washington, D.C. on June 1, 2019. 

Being that I am involved daily in the One SMALL Step community, often helping in the background with technology, logistics, communications and coaching, one might think that by now I am used to the camaraderie, joy, feeling of acceptance and love that comes from attending a One SMALL Step event.  But with each One SMALL Step event that I attend or host, the feelings never fade or dull, they only grow stronger.

Topics: Stories of Hope

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