Foundation for Prader-Willi Blog (70)

First, Do No Harm... An Internet Warning

FPWR, along with Dr. Jennifer Miller and Janalee Heinemann, Director of Research and Medical Affairs, Prader-Willi Syndrome Association (USA), would like to share a reminder with families:

October 1, 2013 Read More

Topics: Research

New Study Examines How Drugs Can Regulate Gene Expression. Important Steps Toward Reactivating the Maternal Allele

“Isn’t there a way to just ‘turn on’ the silent PWS genes on chromosome 15?” It's a common question amongst the PWS community. The PWS genes on the maternal chromosome 15 are present but silenced in all people with PWS, regardless of genetic subtype.

September 15, 2013 Read More

Topics: Research

Empowering Our Community: One SMALL Step Leads to BIG Leaps

While always impressed by the achievements of our community, I could never have imagined how our walks could grow our community, bring us all together and raise MILLIONS of dollars for Prader-Willi Research!! Since our first One SMALL Step walk, we h...

September 12, 2013 Read More

Topics: Research

PWS People: Dedicated Researcher Joins Our Cause AND Our Community

We're pleased to bring you this guest blog by Yinna Ng, FPWR Volunteer Our PWS community is a strong and cohesive one that achieves great things. While a large part of it is built on the determination and strength of families and friends of those wit...

September 5, 2013 Read More

Topics: Research

Breaking Boundaries: Bringing Parents and Researchers Together at the FPWR Research Conference

We're pleased to bring you this guest blog by Ali Shenk, FPWR Volunteer and Conference Participant As usual, the recent FPWR conference in San Antonio, TX, did not disappoint! Kudos once again to the Viroslav family and the rest of the San Antonio te...

September 1, 2013 Read More

Topics: Research

Skin Picking In PWS: An Overview of Incidence and Therapies

It is well accepted that self injurious skin picking is a major struggle among those with PWS, and is an upsetting challenge for parents and caregivers as well. However, there are few studies in this area and statistics are lacking regarding the freq...

August 22, 2013 Read More

Topics: Research

Important steps toward reactivating the maternal allele in PWS: new study examines how drugs can regulate PWS/AS gene expression

One common question in the PWS community is “isn’t there a way to just ‘turn on’ the silent PWS genes on chromosome 15?” As a reminder, the PWS genes are present but silenced on the maternal (mom’s) chromosome 15 in all people with PWS, regardless of...

August 6, 2013 Read More

Topics: Research

Has the mystery of early puberty in PWS been solved?

Individuals with PWS typically have incomplete sexual development, but, paradoxically, often begin to exhibit signs of puberty much earlier than expected. The incidence of bone fide ‘precocious puberty’ in PWS is not entirely clear, but it is evident...

June 9, 2013 Read More

Topics: Research

From discovery to therapeutic...learning about the FDA process

Knowlege is empowering! For those who are interested in learning more about the drug discovery and approval process, the FDA (Federal Drug Administration) has a new informational website directed specifically at patient education and involvement.

May 10, 2013 Read More

Topics: Research

FPWR Blog

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First, Do No Harm... An Internet Warning

New Study Examines How Drugs Can Regulate Gene Expression. Important Steps Toward Reactivating the Maternal Allele

Empowering Our Community: One SMALL Step Leads to BIG Leaps

PWS People: Dedicated Researcher Joins Our Cause AND Our Community

Breaking Boundaries: Bringing Parents and Researchers Together at the FPWR Research Conference

Skin Picking In PWS: An Overview of Incidence and Therapies

Important steps toward reactivating the maternal allele in PWS: new study examines how drugs can regulate PWS/AS gene expression

Has the mystery of early puberty in PWS been solved?

From discovery to therapeutic...learning about the FDA process

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