Foundation for Prader-Willi Blog (63)

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 blo...

January 7, 2017 Read More

Topics: Stories of Hope

2016: Another Remarkable Year for Prader-Willi Research

FPWR community, 2016 was yet another remarkable year for Prader-Willi research! Our supporters have allowed FPWR to fund more research than ever before, taking us closer to treatments for our loved ones with Prader-Willi syndrome. Read below for a fe...

January 6, 2017 Read More

Topics: Research

PWS Clinical Trials Update - Part 2

Over the past 3 years we have seen a number of new companies investing in Prader-Willi Syndrome. This is in part because of PWS's orphan indication and the significant unmet medical need, but is also reflective of the steps we have taken as a communi...

January 4, 2017 Read More

Topics: Research

PWS Clinical Trials Update - Part 1

Over the past 3 years we have seen a number of new companies investing in Prader-Willi Syndrome. This is in part becuase of PWS's orphan indication and the significant unmet medical need, but is also reflective of the steps we have taken as a communi...

January 2, 2017 Read More

Topics: Research

My Child is My Inspiration: If He Can Do It, So Can I

A special contribution by guest blogger Karina O'brien How has your child exceeded your expectations? When we received Noel's diagnosis, we were told he wouldn't be walking before his 5th birthday and would be NG fed until the age of 2. Noel is almos...

December 30, 2016 Read More

Topics: Stories of Hope

Molecular Insights and a New Target for Drug Development in PWS [VIDEO]

Columbia University Medical Center (CUMC) researchers have discovered that a deficiency of the enzyme prohormone covertase (PC1) in the brain may be linked to most of the neuro-hormonal abnormalities in Prader-Willi syndrome (PWS), a genetic conditio...

December 27, 2016 Read More

Topics: Research

I Learned from My Daughter That Life is About Love

A special contribution by guest blogger Chelsea Balumas How has your child exceeded your expectations? Sienna is so strong. She is such a fighter, and she just keeps surprising us with her strides in her development. She was our first child so we don...

December 23, 2016 Read More

Topics: Stories of Hope

FPWR Blog

Categories

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

2016: Another Remarkable Year for Prader-Willi Research

PWS Clinical Trials Update - Part 2

PWS Clinical Trials Update - Part 1

My Child is My Inspiration: If He Can Do It, So Can I

Molecular Insights and a New Target for Drug Development in PWS [VIDEO]

I Learned from My Daughter That Life is About Love

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