To learn more about sleep issues in individuals living with PWS, PWSA | USA created a six-month program entitled Sleep Issues in Prader-Willi Syndrome: A Deep Dive for Parents & Practitioners, which included monthly focus group discussions led by a trained facilitator. The program will conclude with a full day PWSA | USA Virtual Sleep...
Radius Health Releases Helpful Resources for SCOUT-015 Trial
In an effort to help our PWS community better understand its SCOUT-015 trial, Radius Health has released several resources about the process of the study, trial sites, and about their drug RAD011 a synthetic cannabidiol oral solution, which is being studied as a possible treatment for hyperphagia and related behaviors in Prader-Willi syndrome. Click on...
Tell Your US Senator to Vote Against the Reconciliation for Prescription Drug Pricing Legislation
The Reconciliation for Prescription Drug Pricing Legislation could make it even more expensive for pharmaceutical companies to develop therapies for rare diseases! The reconciliation for prescription drug pricing legislation is putting cures at risk for patients and their families. The measure was proposed in an effort to lower out of pocket costs for millions of...
New Guidances Released for Disciplinary Actions in Schools
On July 19, 2022, the U.S. Department of Education Office for Civil Rights (OCR) and Office of Special Education and Rehabilitative Services (OSERS) released new guidances designed to clarify the use of disciplinary practices in schools. The guidances clarify that students with disabilities have legal rights and protections in the Individuals with Disabilities Education Act...
Participate in a PWS Specific Sleep Study
Has your 3–7-year-old child been diagnosed with Prader-Willi syndrome? Do they have trouble sleeping? You may be eligible to participate in a thesis study! If your child has a confirmed diagnosis of Prader-Willi syndrome, is awake at least once per night three nights of the week and has trouble going to bed at least three...
Get to Know Information and Referral Specialist Sarah Kasaby!
What’s your job title? Information & Referral Specialist What sort of duties do you have at work? Front desk Family Support calls and emails, Database merging Do you have any mentors in your professional life? Yes What was your first job? Customer Service Who inspires you? My boss, my brother, my husband What kind of...
Get to Know Alterman Family Support Counselor Kim Tula!
What’s your job title? Alterman Family Support Counselor What was your first job? Hostess What kind of music do you like? Country Do you like traveling? Yes What’s the best place you’ve traveled to? Riviera Maya, Mexico and Disney World Do you like reading? If so, what genre of books do you like? Yes, suspense...
Soleno Therapeutics Provides DCCR Update, Continued Communications with FDA
PWSA | USA is happy to share the most recent news from Soleno Therapeutics regarding DCCR: This morning, Soleno shared that through continued dialogue with the FDA, the FDA acknowledged the data from a proposed randomized withdrawal phase of Study C602 would have the potential to address its concerns regarding the adequacy of the overall...
PWSA | USA Attends IPWSO Conference in Ireland
Between July 6-10, 2022, PWSA | USA was represented at the 11th IPWSO Conference, which took place in Limerick, Ireland. CEO Paige Rivard along with Medical Coordinator Lynn Garrick and others had the incredible opportunity to attend, speak, and host a table on behalf of our national organization. It was a great week meeting families...
How to Develop Positive Relationships with Your School District
Navigating the special education process world can be intimidating, overwhelming, and sometimes downright scary for parents. Building a positive and collaborative relationship with the school district will benefit your student, you, and district officials. It's important to remember that there will be differences of opinions, mistakes, and difficult conversations throughout the school years. When you...
Get to Know Parent Support Coordinator Kristi Rickenbach!
What’s your job title? Parent Support Coordinator What was your first job? Cashier at Burger King Who inspires you? My daughter What kind of music do you like? All music, depends on my mood What’s the best concert you’ve been to? Prince Do you like traveling? I love to travel!! What’s the best place you’ve...
Get to Know Family Support Director Stacy Ward!
Do you have any mentors in your professional life? Several What was your first job? Summer camp counselor Who inspires you? My family What kind of music do you like? Country What’s the best concert you’ve been to? Garth Brooks Do you like traveling? Yes Do you like reading? If so, what genre of...