Help us honor our PWSA | USA volunteers! Do you know someone who deserves to be recognized for their service and dedication to PWSA | USA's mission and the PWS community? 2022 Volunteer Appreciation Award nominations are now being accepted through March 15, 2022. PWSA | USA will give out the following four awards: Advocacy...
PWSA | USA CEO Paige Rivard Participating in Webinar Alongside U.S. Representatives Ahead of Rare Disease Day
As the nation gets ready for Rare Disease Day on February 28, 2022, PWSA | USA CEO Paige Rivard will participate in a national webinar hosted by Harmony Biosciences on Thursday, February 24th at 1pm EST to discuss COVID-19 and Rare Disease Patients. Paige will join U.S. Representative Josh Gottheimer (D-NJ), U.S. Representative Brad Wenstrup...
Prader-Willi Association of New Englandโs Trivia Night
Mike โSargeโ Riley, Professional Sports Announcer and Boston Media Personality from 98.5 will host a virtual trivia night fundraiser for the New England Chapter of the Prader Willi Syndrome Association WHEN: Friday March 11 at 7:30 pm (about an hour) WHERE: Online-via Zoom You will receive a zoom link and a reminder before the event....
PWSA | USA’s Family Support Team Recaps January, February Community Conversations
January Community Conversation: Guardianship Lisa Thornton is not only a parent of a young woman with PWS, but she is an attorney with a lot of experience navigating guardianship and special needs trusts. If, when, and how to apply for guardianship is often a daunting process for parents. Coupled with every state having different processes,...
Apply to Attend PWSA | USA’s 1st Annual Volunteer Summit!
APPLICATION DEADLINE: Friday, March 4, 2022 Our PWSA | USA Volunteer Summit is a unique opportunity to unite, support, and celebrate PWSA | USA volunteers who share a passion for supporting individuals and families within the PWS community. In addition to celebrating our volunteers, staff and special speakers will share new information, host small group...
Join us for the March Advocacy in Action Webinar with Speaker Maureen Tracey
When: March 9, 2022 at 8:00 p.m. EST Topic: Navigating and Advocating the Special Education Process for Students with PWS REGISTER IN ADVANCE HERE Advocacy In Action is happy to welcome one of our own as our guest presenter for the month of March: Maureen Tracey, Founder and CEO of Four Seasons Behavioral Solutions As...
Brain Tissue Donation: Honoring Loved One’s Through Hope
Autism BrainNetย is a program of the Simons Foundation Autism Research Initiative (SFARI) that promotes innovative, high-quality research on postmortem brain tissue to improve the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions. We work with Autism BrainNet to promote a greater knowledge of neurodevelopmental conditions and brain tissue research,...
Learn More About Harmony Biosciences Phase 2 Study of Pitolisant for PWS
Does your loved one struggle with daytime sleepiness? Would you like to learn more about a potential treatment for daytime sleepiness, cognition, and behavior? Join PWSA | USA, FPWR, and Harmony Biosciences Wednesday, February 16th at 3:30 pm ET for a short presentation followed by Q&A to learn more about the Phase 2 study of...
Be PWSA | USA’s Valentine!
Share Your Heart with PWSA | USA on Valentine's Day Forget the flowers! Cancel the chocolate! Please be OUR Valentine with your gift to PWSA | USA's Hearts of Hope campaign between Tuesday, February 8, 2022 and Sunday, February 20, 2022. By making a donation to the Hearts of Hope campaign, you will have the...
February Donor Spotlight
PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we spotlight a donor and their story showcasing the...
Harmony Biosciences Now Enrolling Individuals with PWS for Upcoming Clinical Trial
Harmony Biosciences has released information about their PWS Phase 2 clinical trial where they will be studying "the safety and impact of an investigational medication on excessive daytime sleepiness, cognition, and behavioral function in people with PWS." Harmony Biosciences is currently looking for individuals with PWS between the ages of 6-65 to enroll in this...
JAMA Newborn Screening Article: Feasible to Screen for all Chromosome 15 Imprinting Disorders, Including PWS, Using SNRPN Methylation Analysis
Dr. Merlin Butler, who has made a tremendous impact on the PWS community, specifically with his research work studying the genetics of PWS, recently shared a new article with PWSA | USA regarding the JAMA Newborn Screening study. The objective of the study was "to examine the feasibility of newborn screening for these chromosome 15...
Clint Hurdle Hot Stove Dinner: A Look Back at the Past, Forward to the Future
As we get ready for the 8th Annual Hot Stove Dinner, which will be held on March 26th at the Key Royale Club on Anna Maria Island, Florida AND online for virtual guests, event host Clint Hurdle takes us on a trip down memory lane! Below, Clint shares how he and his wife Karla created...
Radius Health Shares Information about its Drug RAD011, Upcoming Study in New Fact Sheet
January 24, 2021 -- Radius Health, Inc. recently unveiled a detailed fact sheet about its drug RAD011, a synthetic cannabidiol oral solution, which is being studied as a possible treatment for hyperphagia and related behaviors in Prader-Willi syndrome. The fact sheet also gives a description of Radius Health's upcoming SCOUT-015 clinical trial. According to Radius...
Soleno Therapeutics Provides Update on DCCR
January 24 ,2022 -- PWSA| USA is sharing the most recent news released on the status of Soleno Therapeutics' drug DCCR (diazoxide choline) for the treatment of Prader-Willi syndrome. Soleno announced today that it has received the official minutes from a December 2021 meeting with the FDA's Division of Psychiatry. This meeting was a follow...
Join us for the February Advocacy in Action Webinar with Guest Speaker Guy Stephens
Advocacy In Action is excited to welcome our guest presenter for the month of February, Guy Stephens, Founder and Executive Director for the Alliance Against Seclusion and Restraint (ASSR)ย Join us February 9, 2022 at 8:00 p.m. EST for our next Advocacy in Action webinar, as part of our continuous series to raise awareness and...
Levo Therapeutics Receives Complete Response from FDA for its Decision on Carbetocin
January 18, 2022 08:00 ETย | Source:ย Levo Therapeutics, Inc. CHICAGO, Jan. 18, 2022 (GLOBE NEWSWIRE) -- Levo Therapeutics, Inc., a biotechnology company dedicated to using genetic insights to advance treatments for Prader-Willi syndrome (PWS) and related disorders, announced today that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA)...
Saniona Launches TM006 Study Website to Advance Testing Efforts for Tesomet, a Drug to Help Individuals with PWS Feel Less Hungry
Following Sanionaโs announcement that the company is initiating its Phase 2b clinical trial for Tesomet, which is being studied as a treatment for hyperphagia in Prader-Willi syndrome, the company has launched a website to help advance testing efforts for the drug. If you would like to participate in PWS research for Sanionaโs TM006 study, this...
Shine a Light on Rare Disease Day!
Monday, February 28, 2022 is Rare Disease Day and we are asking YOU, our PWS community, to help shine a light on this important day! There are many ways we can come together even if we donโt do so physically. Being part of a global chain of lights in recognition of Rare Disease Day is...
National Research Study Seeks Participation from Parents of Adults with Intellectual, Developmental Disabilities
TAKE SURVEY HERE INTERESTED IN BEING INTERVIEWED? CLICK HERE DOWNLOAD FLYER HERE
Donor Spotlight: Rob Lutz
PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...
PWSA | USA Welcomes Two New Staff Members
We are excited to welcome two new staff members to our PWSA | USA team! Get to know them a little bit more below: Angela Frazier, Events Coordinator Angela has been married for 20 years and lives with her family, including 4 children, in Austin, Texas.ย Her youngest, Joseph, was diagnosed with PWS when he...
Saniona Initiates Phase 2b Clinical Trial of Tesomet for Prader-Willi Syndrome
Via Saniona: PRESS RELEASE Decemberย 28, 2021 Saniona (OMX: SANION), a clinical-stage biopharmaceutical company focused on rare diseases, today announcedย the initiation of a Phase 2b clinical trial of Tesomet in patients with Prader-Willi syndrome (PWS). Tesomet is an investigational fixed-dose combination therapy of tesofensine,ย a triple monoamine reuptake inhibitor, and metoprolol,ย a beta-1 selective blocker. Data from the...
PWSA | USA, Letโs Go Fitness Team Up to Provide Free Exercise Opportunity for PWS Individuals
December 22, 2021 -- With a new year, comes new and exciting opportunities! PWSA | USA has partnered with Letโs Go Fitness, an online fitness community that celebrates diverse abilities, to provide free virtual exercise classes for individuals living with Prader-Willi syndrome. On January 7, 2022, an application will be available for those interested in...