A special contribution by guest blogger Natalie Brenneman Evan emerged into the world lifeless and blue. I remember watching my husband shifting back and forth on his tiptoes behind the medical team working to resuscitate him. “It’s a boy!” he finally shouted from across the room. Twenty minutes...
Source: FPWR Blog
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Published: February 2 2020 - 09:00 AM
A new pilot project will map the genomes of 50 people with PWS and integrate that information with the Global PWS Registry data — with support from donors around the world. This first-ever PWS Genome Project seeks to help researchers better understand differences in PWS symptoms and severity from...
Source: FPWR Blog
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Published: February 2 2020 - 09:11 AM
Temper outburst and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family (Tsai 2018). Now, a promising study finds that four out of five participants had a reduction in temper outbursts after wearing a activated vagus nerve...
Source: FPWR Blog
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Published: February 2 2020 - 08:44 AM
We have exciting news to share! Soleno therapeutics has successfully enrolled 100 patients into their Phase 3 clinical study of DCCR. This is our second clinical trial which has completed enrollment in the past 2 months! Several additional studies are still enrolling patients. FPWR maintains the...
Source: FPWR Blog
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Published: January 1 2020 - 09:00 AM
We have more reasons than ever to be optimistic of a new FDA approved treatment for PWS in 2020. Just last week we learned of successful enrollment for the second ongoing pivotal PWS clinical trial (Soleno’s Destiny PWS study), which comes on the heels of Millendo’s Zephyr study reaching its...
Source: FPWR Blog
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Published: January 1 2020 - 10:57 AM
