Foundation for Prader-Willi Blog (60)

Study Ties PWS Characteristics to PC1 Enzyme Deficiency [VIDEO]

FPWR is excited to share a new discovery in Prader-Willi Syndrome! Columbia University Medical Center researchers Lisa Burnett, PhD, and Rudolph Leibel, PhD, have published a breakthrough discovery in the Journal of Clinical Investigation that change...

February 2, 2017 Read More

Topics: Research

The Changing Force of My Daughter's Future ... Me

A special contribution by guest blogger Gwyn Spearman It starts with one SMALL step... That sums up our approach to dealing with our "new normal." We have taken small steps, toward big dreams, goals, hopes, and expectations for Ellie. First, we navig...

January 27, 2017 Read More

Topics: Stories of Hope

De-Risking PWS Drug Development Through Preclinical Screening

Any drug development process proceeds through several stages in order to produce a drug that is safe, efficacious, and has passed all regulatory requirements. The discovery phase converts what we have learned about the causes and the biology of the d...

January 25, 2017 Read More

Topics: Research

Identifying the Neurobiology Behind Sleep Issues in PWS

Sleep disturbances and daytime sleepiness severely impact the quality of life for many with PWS, as well as their parents and caregivers. Within the Global PWS Registry, about 50% of respondents report that their loved one suffers from excessive dayt...

January 23, 2017 Read More

Topics: Research

PWS Research: Defining SNORD116 Gene Targets, Fixing Function

January 16, 2017 Read More

Topics: Research

Dream, Believe, Achieve

I’m a mom so you know my memory is full of as many holes as Swiss cheese. I can’t remember much of anything that took place more than 5 years ago. On particularly fine days, I may be lucky to remember something that was said within the past 5 minutes...

January 13, 2017 Read More

Topics: Stories of Hope

Studying a Novel Model of Adult-Onset SNORD116 Deletion in Mice

In contrast to many rare diseases that can be traced to a single gene, PWS involves a region of DNA that encompasses numerous genes. A lot of PWS research is centered around trying to connect the dots between the genes in the PWS region and the actua...

January 11, 2017 Read More

Topics: Research

The Value of Patient Input and Perspective in Drug Development

Janet Woodock, MD, Director of the Center for Drug Evaluation and Research at the FDA, recently highlighted how the FDA is placing a high priority on patient input and perspective in the drug development process. The agency recognizes that patients, ...

January 9, 2017 Read More

Topics: Research

A Dream I Can Believe In

When I was pregnant with Lily I had all of these dreams of what it would be like to have a baby. I read all of the books on parenting I could get my hands on; books about what to expect while I was expecting, how to have the happiest baby on the bloc...

January 7, 2017 Read More

Topics: Stories of Hope

FPWR Blog

Categories

Study Ties PWS Characteristics to PC1 Enzyme Deficiency [VIDEO]

The Changing Force of My Daughter's Future ... Me

De-Risking PWS Drug Development Through Preclinical Screening

Identifying the Neurobiology Behind Sleep Issues in PWS

PWS Research: Defining SNORD116 Gene Targets, Fixing Function

Dream, Believe, Achieve

Studying a Novel Model of Adult-Onset SNORD116 Deletion in Mice

The Value of Patient Input and Perspective in Drug Development

A Dream I Can Believe In

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