Topics: Research
“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.
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...
Topics: Research
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...
Topics: Research
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...
Topics: Research
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...
Topics: Research
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...
Topics: Research
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...
Topics: Research
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.
Topics: Research
Within PWS and general obesity research, there are several labs currently working in the area of serotonin signaling. Serotonin is a neurotransmitter and this pathway contributes to the regulation of appetite and mood, and is reported to be altered i...
Topics: Research