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...
Learn How to Communicate with Elected Officials and Stakeholders
Join PWSA | USA for our July Advocacy in Action webinar: Effective Communication with Elected Officials and Stakeholders - A Virtual Roundtable and Panel Discussion When: July 25, 2022 at 2:00PM EST Register in advance here: https://us02web.zoom.us/webinar/register/WN_W4pZ9Q34R3GoO9HdBpmMbg PWSA | USA is excited to bring you this Virtual Roundtable and Panel Discussion on Effective Communication with...
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!
A Look into AME Community Services’ Minnesota Prader-Willi Group Home
Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW and Medical/Research Coordinator Lynn Garrick, RN AME Community Services, Inc in Hastings, Minnesota is a company committed to supporting individuals with disabilities to achieve their goals, big or small. AME currently has 11 Prader-Willi Syndrome specific group homes, which are licensed through...
Early Intervention: IDEA Part C
Contributed by PWSA | USA's Family Support Director Stacy Ward PWSA | USA often receives questions about early intervention, the difference between Individualized Education Programs and Individual Family Support Plans, and how to qualify for each from parents. Part C (Early Intervention) of the Individuals with Disabilities Education Act (IDEA) was established in 1986 by...
2022 PWSA | USA Volunteer Summit Recap
Contributed by PWSA | USA Community Engagement Coordinator Dorothea Lantz If there is one word to describe the events of PWSA | USA’s first ever Volunteer Summit in Dallas, it would be magical. We had more than 30 of our dedicated volunteers in attendance for a Saturday filled with hope and ideas on how to...
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...