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...
Category: Blog
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...
A Look into Mainstay Life Services’ Pennsylvania Prader-Willi Group Home
Mainstay Life Services is a provider in Pittsburg, PA that supports individuals with Prader-Willi syndrome (PWS). Currently, Mainstay Life Services has eight group homes and will be opening another home in the near future. All of the homes are licensed under 6400 regulations through the state of PA. According to Jen Dayton, Associate Director of...
Help PWSA | USA Raise Awareness for the Upcoming D.C. Fly-In by Writing an Op-Ed Piece
There are many ways to raise awareness for a cause you're passionate about but personal stories typically create the biggest buzz and generate the most attention. It's often difficult to find a starting point - how do I get my story out and who do I send it to? We're here to help! Ahead of...
Enjoy Summer with this List of Fun Activities!
Summer vacation has begun for many students throughout the country. Parents and caregivers are challenged with taking advantage of warmer weather and more daylight while still maintaining the level of structure and routine their loved one with Prader-Willi syndrome needs. For some people, coming up with fun activities is a stressor. PWSA | USA has...
PWSA | USA Advocacy in Action: Spotlight on Capitol Hill
Representing PWSA | USA and their loved ones with Prader-Willi syndrome, our Community Engagement Specialist, Dorothea Lantz, and one of our amazing advocates from Virginia, Charles Conway, together with their families in tow, joined Patients Rising Now and more than 60 caregivers and patients with chronic and life-threatening illnesses from across the nation this past...
READ: Delores Baker Shares Daughter, Lindsay’s, Success in 2022 Special Olympics Debut
Lindsay Baker, 31, who is living with Prader-Willi syndrome, made a splash at the 2022 Special Olympic Games in Orlando, FL by competing in and medaling in not one, but TWO swimming events! PWSA | USA had the opportunity to speak with Lindsay's mom, Delores, who shared her daughter's incredible journey from birth and her...
PWSA | USA Family Support Team Shares Tips to Stay Cool During the Hot Summer Months
As the weather warms up and we see a few extra hours of daylight, spending time with your family, having fun, and de-stressing is a must do. Whether you are hiking near a waterfall, camping in your backyard, riding bikes through your neighborhood, or running through the sprinkler, doing it together as a family will...
Family Support Spotlight: “They Always Made Me Feel Like There is Hope”
"I would like to send a huge thank you to everyone at the Family Support team. The last couple of years have been extremely stressful. My child is really struggling with behavior issues and stealing food. We've had deputies at our house a half dozen times, we've had to call and she has called them...
Kasey Bedard, Ph.D., BCBA-D, IBA Shares Findings from Research Study Funded by PWSA | USA
PWSA | USA is excited to share the findings from a grant funding opportunity, awarded to and studied by Kasey Bedard, Ph.D., BCBA-D, IBA. This grant assisted Kasey with her work on PWS Smart-Start, a behavior-analytic caregiver training program. Kasey gives a brief overview of her results below. ------------------------------------------------------------------------------------------ Contributed by Kasey Bedard The purpose...
Stay Hydrated in Style with PWSA | USA’s Hope United Water Bottles!
Just in time for summer, stay hydrated in style with our brand-new Hope United water bottles! The water bottles come in two sizes - 20 oz. or 40 oz. They also come in multiple colors including white, purple, green, orange, red, pink, yellow, and more! BONUS: You have the option to personalize your water bottle!...
LEVO Therapeutics to Close PWS Drug Trial, Phase III Carbetocin
Yesterday afternoon, PWSA | USA learned in a conversation with LEVO Therapeutics that the company has made the decision to close their Phase III Carbetocin study. LEVO shared they are in the process of potentially being acquired. If this happens, the new company will ultimately make the decision about how and when the next study...
PWSA | USA Unveils Exciting New Initiative: PWS Hope United!
The wait is finally over! We are thrilled to reveal PWSA | USA's exciting new initiative, which our team has been hard at work preparing for. CEO Paige Rivard shares insight on our new Peer-to-Peer Fundraising platform, PWS Hope United, in the video below! Please join us next Tuesday, May 31st, for our May Community...
PWSA | USA’s Family Support Program Offers Help + Hope!
PWSA | USA's 2022 Family Support Campaign begins June 1, 2022 and will last through July 31, 2022 At all ages and stages, PWSA | USA’s Family Support team is always here to offer HELP + HOPE. From your first days in the NICU, to your loved one’s school IEP, food-seeking and behavioral needs, guardianship,...
Save the Date: PWSA | USA’s First Ever D.C. Fly-In Event
The centerpiece of PWSA | USA's 2022 Advocacy initiative is our first ever D.C. Fly-In. This exciting, in-person event will take place September 19 - 21, 2022 in Washington, D.C. and provide an opportunity for our state activists to expand their efforts and engage their individual members of Congress. Our platform will be to encourage...
RESCHEDULED: Join us for our Next Advocacy in Action Webinar on June 8th!
Due to technical issues, we were forced to reschedule our May Advocacy in Action webinar featuring Rachel Derby with Patients Rising for June 8, 2022 at 8:00 p.m. EST. We apologize for any inconvenience this may have caused, but we’re looking forward to seeing all of you who can attend!
It’s Teacher Appreciation Week!
Contributed by PWSA | USA Family Support Director Stacy Ward Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you? I know I would not be. I considered being a teacher – who does not love the idea of getting out of work by three...
The 2022 Giving Challenge is now LIVE!
The Giving Challenge starts TODAY (April 26, 2022) at 12:00 p.m. EST, and we need YOU to help us make the most of this incredible matching gift opportunity! Thanks to The Patterson Foundation, every gift made from noon today until noon tomorrow (April 27, 2022) will be DOUBLED up to $100. That means your gift...
Hyperphagia and How it Affects Learning
Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...
PWSA | USA is Getting Ready for our First Annual Volunteer Summit
PWSA | USA staff members are putting the final preparations together for the organization's first-ever Volunteer Summit, which will be held April 29, 2022 - May 1, 2022 in Dallas, TX. We are looking forward to welcoming many of our dedicated volunteers! At this time, we are no longer accepting new attendees, but be on...
National Siblings Day: Joe Gill
April 10, 2022 is National Siblings Day, a day where we take the opportunity to celebrate and recognize the amazing siblings in our PWS community. One sibling in particular is going above and beyond to raise awareness and funds for our rare disease community. Joe Gill, 22, will be running in the upcoming Boston Marathon...