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FPWR Blog

How Children With Language Delays Can Succeed in the Classroom

Within the general population, there is a reading crisis in America. Many Americans only achieve a fifth- or sixth-grade reading level. If that's the case with the general population, how serious is the problem among those who have severe speech/lang...

Topics: Research

Feeding Children with PWS: Speaker Melanie Silverman

Feeding difficulties are common in young children with Prader-Willi syndrome, and it's common for parents to struggle with feeding children with PWS. Many parents seek nutrition advice to help implement a healthy diet, and over the past 12 years, hun...

Topics: Research

What Is Prader-Willi Syndrome? A Primer for Parents

As a parent of a child with Prader-Willi syndrome (PWS), I want to tell every parent who's just received a diagnosis: don't believe everything you read! At the same time, there are a few basic facts about PWS that are helpful to know, and in this blo...

Mental Health in PWS – Mindfulness, Exercise May Help

Staying mentally well can be a challenge for all of us, but is particularly difficult for those with PWS. While medications can be an important part of maintaining good mental health in PWS, we're always on the lookout for approaches and intervention...

Topics: Research

First Steps After PWS Diagnosis

When you first receive your child’s Prader-Willi syndrome (PWS) diagnosis, it can feel as if his or her whole life is flashing in front of you, with an infinite list of concerns. Based on the experiences of parents involved in FPWR, here's a suggeste...

New CRISPR Gene Editing Options Focus on RNA

If you pay attention to science 'buzz', you've probably heard of CRISPR technology. This technology allows scientists to precisely modify DNA sequences. First adapted for genome editing in 2013, use of CRISPR systems has exploded in research labs, al...

Topics: Research

Telehealth: PWS Healthcare Through Your Computer

Telehealth, or the "delivery of health-related services and information via telecommunications" such as through a computer is a growing trend in health care. A recent report from a group at Michigan State University shows how their online program is ...

Topics: Research

Ghrelin Research Explores Switch from Failure to Thrive to Obesity

Dr. Maithé Tauber and colleagues recently reported interesting results on the hunger hormone ghrelin. They show that the ratio of active (AG) to inactive (UAG) forms of ghrelin changes over time. They hypothesize that this change may play a role in t...

Topics: Research

A Father's Biggest Dream: A Fulfilling, Independent Life for His Son

Our FPWR community has no shortage of amazing fathers. We honor your selfless commitment to supporting your children and helping to insure a brighter future for them. We asked Josh Gilliam, dad to Jackson, to share his FPWR story in honor of all dads...

Topics: Stories of Hope