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...
IPWSO Conference 2022: Call for Abstracts
IPWSO 2022 - Call for Abstracts: Professional Providers and Caregivers - 7 & 8 July 2022, University of Limerick, Ireland. Please spread the word!ย The IPWSO 2022 Professional Providers and Caregivers Conference is now calling for abstracts for presentations to be submitted for the Conference on 7 and 8 July 2022 at the University of...
Donor Spotlight: Elaine Towle
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 Board Member Clint Hurdle Accepts Position with Colorado Rockies as Assistant GM
December 13, 2021 -- We are very proud and excited for PWSA | USA Board of Directors member Clint Hurdle as he makes a return to the Colorado Rockies baseball team and takes on the role of Assistant to the General Manager. Clint is a longtime supporter of PWSA | USA and has been an...
The Chicago School of Professional Psychology is looking for Research Study Participants
YOU can help the Chicago School of Professional Psychology learn about the effects of a behavioral caregiver training program for caregivers of children with PWS. Participants will be compensated with a $500 Visa gift card following the completion of the study. Parents with children with multiple diagnoses can reach out to Dr. Bedard for clarification...
Research Survey Opportunity: Behavioral Supports and Services for Children with Prader-Willi Syndrome
Are you a caregiver of at least one child, of any age, who has been diagnosed with Prader-Willi Syndrome? Do you have access to the internet and an internet-connected device? Can you read and write in English? Are you over the age of 18? If you answered YES to these questions, you are invited to...
Giving Tuesday: Here’s How You Can Support PWSA | USA
Are you planning on making a year-end gift? Giving Tuesday is just one week away and is the perfect opportunity to show your support! Thanks to the generosity of an anonymous donor, your Giving Tuesday donation will be MATCHEDย dollar for dollar up toย $13,000. Make a gift on November 30, 2021 and give twice the good...
Bid on Dozens of Incredible Angel Drive Auction Items
We are excited to share that the 2021 PWSA | USA Angel Drive Auction is now LIVE, and just in time for the holidays! Browse through our incredible items and place your bids TODAY! Funds from the auction support our 2021 Angel Drive. Together, we can help to make sure all families have the support...
8th Annual Clint Hurdle Hot Stove Dinner 2022: Save the Date!
We are excited to announce the date for the 8th Annual Clint Hurdle Hot Stove Dinner.ย Please mark your calendars for March 26, 2022 and save the date toย join us on Anna Maria Island or online! Sip, Savor, and Support Prader-Willi Syndrome Association | USA while enjoying the outdoor event on the beautiful grounds...