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...
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...