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Posts
- Community Collectives: Creating Support for Caregivers
- Ask Nurse Lynn: Switching from Abilify to Risperidone
- You’re Invited: Webinar on Prader-Willi Syndrome and VYKAT™ XR (diazoxide choline)
- Cocktails for a Cause: A Night of Community, Celebration, and Impact
- Ask Nurse Lynn: Females with PWS and Fertility
- PWS Families Gather in Egypt for Nile Hope Workshop and Camp
- Cuts to Department of Education Affect Individuals with PWS – Call to Action!
- A Halloween Party with Heart: Dancing Silly for Prader-Willi
- Soleno Therapeutics to Invest $5 Million in Research Toward a Potential Cure for Prader-Willi Syndrome
- Ask Nurse Lynn: New Forgetfulness and Neurological/Psychological Concerns
- Ask Nurse Lynn: Testosterone Treatment in PWS
- Calling Indiana PWS Families!
- Intervening with a Bully, One Family’s Experience
- Journey of Hope Gala Recap: Celebrating 50 Years of PWSA | USA
- HERO Clinical Trial for ARD-101 Now Enrolling Open-Label Extension (OLE)
- Calling Missouri PWS Families!
- Ask Nurse Lynn: Stretch Marks with Estradiol
- Understanding P&T Committees and DUR Boards
- Acadia Shares Results of Phase 3 Carbetocin Trial: Primary Endpoint Not Met
- Ask Nurse Lynn: Feeding Tube for Adult
- Rising Star in the PWS Community and Beyond
- Adults with PWS: Living a Happy, Healthy Life
- Affecting Sleep with PWS
- Honoring the Residential Providers in the PWS Community
- Ask Nurse Lynn: Nicotine Addiction in PWS
- In Recognition of Direct Support Professionals
- Grandparent Perspectives
- A Message from Soleno Therapeutics to the PWS Community
- Calling Alaska PWS Families
- Calling Montana PWS Families
- Ask Nurse Lynn: Glucose Monitoring
- Honoring the Clinicians Who Guide Our Community
- The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation
- Ask Nurse Lynn: Anesthesia Safety and Concerns
- Calling Minnesota PWS Families
- Volunteer Spotlight: A Grandparent with a Heart of Gold
- Journey of Hope Gala Honoree Spotlight: Merlin Butler, MD, PhD, FFACMG
- Journey of Hope Gala Honoree Spotlight: Jim Kane
- Journey of Hope Gala Honoree Spotlight: Dr. Vanja Holm
- Journey of Hope Gala Honoree Spotlight: Lota Mitchell, MSW
- Journey of Hope Gala Honoree Spotlight: Jim and Joan Gardner
- Ask Nurse Lynn: Colon Cancer Screening, Why and How
- Michigan PWS Families – Your Voices are Needed!
- The Importance of Caring for your Relationship
- PWS Advocates Participate in Rare Across America Congressional Meetings
- Journey of Hope Gala Honoree Spotlight: Janalee Heinemann
- Journey of Hope Gala Honoree Spotlight: Dr. Moris Angulo, MD
- Ask Nurse Lynn: Bowel Blockage, Edema, and Hospital Stay
- Journey of Hope Gala Honoree Spotlight: Gene & Fausta Deterling
- Journey of Hope Gala Honoree Spotlight: Dr. Suzanne Cassidy, MD
- Federal Budget Proposals Could Undermine Critical Supports for Students with Prader-Willi Syndrome
- Journey of Hope Gala Honoree Spotlight: Dr. Dan Driscoll, MD, PhD
- Aardvark Therapeutics HERO Trial: U.S. Sites Now Open
- Ask Nurse Lynn: Picking Compulsion and Genetic Subtypes
- Colorado PWS Families – Your Voices are Needed!
- Exciting News! PWS Included in FY26 Department of Defense Appropriations Bill for Medical Research
- Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future
- PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999
- PWS TEMPO Clinical Trial Webinar with Harmony Biosciences
- Volunteer Spotlight: Melissa Rivas – Spreading Joy, Creativity, and Hope
- Ask Nurse Lynn: Leptin and Hyperphagia
- The Road to the Americans with Disabilities Act (ADA)
- Ask Nurse Lynn: Risks of GLP-1 Medications
- You’re Invited: Celebrate PWSA | USA’s 50th Anniversary at the Journey of Hope Gala
- Volunteer Spotlight: Pillar of Strength, Support, and Hope
- Building Our Social Skills (BOSS) Program Begins Again
- Ask Nurse Lynn: Ocular Issues and Eye Patching
- PWSA | USA Helps Usher in New Era of Rare Disease Research with Launch of Florida’s Sunshine Genetics Act
- Volunteer Spotlight: The Spirit of Compassion and Community Behind-the-Scenes
- Together in Phoenix: A Look Back at the 2025 United in Hope International PWS Conference
- Ask Nurse Lynn: Pain Management on Hospice Care
- Conference Recap from a Grateful Mom and a Happy Daughter
- Ask Nurse Lynn: Aging in PWS and Life Spans
- Navigating Summer Celebrations
- Ask Nurse Lynn: Supplement, Medication for Skin Picking
- Hippotherapy and PWS
- PWSA | USA Advocacy Ambassadors Join Forces with Patients Rising on Capitol Hill
- Ask Nurse Lynn: Weight, BMI, Blood Sugar Levels
- Adults with PWS Advisory Board Spotlight: Brooke Fuller
- Ask Nurse Lynn: Understanding and Mitigating Potential Psychosis
- Adults with PWS Advisory Board Spotlight: Abbott Philson
- Hummus, Tahini, and PWS Awareness
- Spotlight on Hope: Ada Thrives and Shines
- Ask Nurse Lynn: Osteoporosis, Calcium, Vitamin D
- How To Join a PWS United Livestream on Podbean
- Adults with PWS Advisory Board Spotlight: Kate Kane
- Ask Nurse Lynn: Anemia and Iron Supplementation
- Adults with PWS Advisory Board Spotlight: James Towle
- Ask Nurse Lynn: hCG and Hypogonadism
- In Memory of Jim Gardner
- Aardvark Therapeutics Launches HERO, A Phase 3 Trial of ARD-101 for Treatment of Hyperphagia in PWS; Now Enrolling Participants in the US
- Adults with PWS Advisory Board Spotlight: Trevor Ryan
- Adults with PWS Advisory Board Spotlight: Conor Heybach
- Spotlight on Hope: Lydia and Dalyas Dreamers
- Ask Nurse Lynn: Genetics and Weight Gain
- Adults with PWS Advisory Board Spotlight: Shawn Cooper
- 2025 Family Conference Attendees: We Need Your Feedback
- PWSA Advocates Represent Disability Needs and Rights in DC
- Filling Cups with PWS Awareness
- Ask Nurse Lynn: Treatment-Resistant Psychosis and Clozapine
- Dine for a Cause This PWS Awareness Day – May 15 in Pennsylvania!
- Spotlight on Hope: Mastering Karate with Cameron
- Adults with PWS Advisory Board Spotlight: Victor Penta
- Ask Nurse Lynn: Fevers with PWS
- VYKAT XR Town Hall Summary
- Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics
- Occupational Therapy, Parent Perspective
- Ask Nurse Lynn: Maintaining a Healthy Lifestyle
- Zahra’s Night of Light Shines Bright!
- Celebrating Occupational Therapy Month: How OT Builds Confidence, Comfort, and Skills for Life
- Post a Message for Mother’s Day
- Ask Nurse Lynn: Hygiene Concerns and Solutions
- Adults with PWS Advisory Board Submissions for PWS Awareness Month
- Ask Nurse Lynn: Skin Picking Strategies
- Request for Prader-Willi Syndrome Research Grant Applications
- Prader-Willi Syndrome Clinical Scholarship Announcement
- What It’s Like to Have a Sibling with PWS
- A Loving School is Vital
- Ask Nurse Lynn: Food-Seeking Behaviors
- Free Live Webinar: Understanding VYKAT XR – The First FDA-Approved Treatment for Hyperphagia in PWS
- IVF Miracle
- With New Treatment Comes Renewed Hope
- PWS Breaking News! FDA Approves First-Ever Treatment for Hyperphagia in PWS
- Ask Nurse Lynn: Growth Hormone Levels
- Women in PWS: Moving Forward Together
- Staying Cool at Conference
- Ask Nurse Lynn: Respiratory Infections
- Take Action: Help Pass the Sunshine Genetics Act in Florida!
- Spotlight on Hope: Blessed by Micah’s Life
- New for PWS Awareness Month: Host a United We Brunch!
- Ask Nurse Lynn: Machines for Sleep Apnea
- TREND Report: Gastrointestinal Issues in the PWS Community
- Her Own Home with Family Nearby
- United for Change: PWSA | USA Advocates Make a Powerful Impact During Rare Disease Week 2025
- Ask Nurse Lynn: Interventions for Rectal Picking
- Reflections from Rare Disease Week Advocates
- Join Rare Disease Week Advocacy from Home
- Ask Nurse Lynn: Expectations with PWS
- New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS
- Call to Action: Save Our Clinical Trials
- Celebrating National Caregivers Day 2025
- Ask Nurse Lynn: Memory, Confabulation, and Aging in PWS
- National Parks Access Pass for Disabilities
- A Legacy of Love: The Story Behind the Hot Stove Dinner and Its Impact on the PWS Community
- Ask Nurse Lynn: Using Sign Language
- Spotlight on Hope: Cam, PWS Warrior
- TREND Pulse Report: PWS and Emotional and Behavioral Patterns
- Victory for the PWS Community in Illinois
- Steps Toward More Independent Living
- Ask Nurse Lynn: Digestion and Vasovagal Episodes
- Spotlight on Hope: Cierra’s Success
- Ask Nurse Lynn: GLP-1 Medications and PWS
- Building Knowledge and Confidence: PWSA | USA’s Transformative Training Programs
- Advocates Secure Policy Progress for PWS Community at Texas Governor’s Committee on People with Disabilities Meeting
- Anxiety and PWS
- Ask Nurse Lynn: Growth Hormone Dosage
- Spotlight on Hope: Overcoming What Feels Impossible
- Volunteer Spotlight | Leadership and Vision: More Than 20 Years of Service
- Changes at FDA’s Center for Drug Evaluation and Research
- Ask Nurse Lynn: Determining Appropriate Setraline Dose
- Share Your PWSA | USA Volunteer Spotlight
- Share Your “PWS in Adulthood” Story
- Trial Transitions and Testimonials
- Ask Nurse Lynn: Managing Food-Related Behaviors
- PWS Advocacy Master Class: Register Before January 13th!
- Spotlight on Hope: Lenny’s Business Fair Breakthrough
- Celebrating 50 Years of Hope: Ushering in PWSA | USA’s Anniversary Year
- A Global Network of Hope: How PWSA Egypt & Middle East is Transforming Lives
- Ask Nurse Lynn: Late Diagnosis and Newborn Screening
- 2024 Year End Highlights
- Ask Nurse Lynn: Infant Growth
- Advocating for Rare Diseases: Year-End Highlights and Uncertain Next Steps
- Klara on the Run
- Empowering Change: Inclusive Advocacy in Action
- Ask Nurse Lynn: Tapering Lorazepam
- Managing Living Situations
- Ask Nurse Lynn: Weight Gain Health Concerns
- The (Sometimes Messy) Details of Life in a Clinical Trial
- Ask Nurse Lynn: When to Start Growth Hormone
- Care Guide for Babysitters and Respite Workers
- Letter to Community on FDA’s Extension of DCCR Review
- FDA Extends Review Period for DCCR: What It Means for the PWS Community
- An Adoption Story
- Ask Nurse Lynn: Excessive Sexual Behaviors
- Get Ready to Give Hope, Double Your Impact this Giving Tuesday!
- Preparing for the Holidays
- Ask Nurse Lynn: Seizures
- International 15q Day
- PWSA | USA Hope in Action: A Lifeline for Families in Crisis
- PWSA | USA Hope in Action: School Support
- Ask Nurse Lynn: Anesthesia Concerns and Dental Procedure
- Simple Tools for Managing Stress
- TREND Pulse Report: PWS and Pain
- Ask Nurse Lynn: Medications and Mental Health
- Workplace Assistance
- PWSA | USA Advocates for PWS on Capitol Hill and NORD Breakthrough Summit
- Ask Nurse Lynn: Emergency Information Folder
- Help PWSA | USA Turn Hope into Action: Support the 2024 Angel Drive Campaign
- Baseline and Video Interview
- Ask Nurse Lynn: Life Expectancy and Aging Concerns
- Adults with PWS Advisory Board Gathers in Phoenix: Shaping the Future of Support, Advocacy for Individuals Living with PWS
- Acadia Announces Health Canada Approval for Rhett Syndrome Treatment
- Forces of Nature, A PWS Book Review
- Ask Nurse Lynn: Aging in PWS
- FDA Priority Review of DCCR for PWS: Latest Update and What It Means
- The Importance of Dealing with Grief
- Ask Nurse Lynn: Systemic Inflammatory Response Syndrome
- Spreading Joy: Operation Holiday Cheer Returns to Support PWS Families in 2024
- The Many Factors of Independence
- Ask Nurse Lynn: Bowel Movements and Picking
- A Parent’s Perspective on their Child’s Clinical Trial
- The Screening Appointment
- How We Got Here
- Update on Phase 3 COMPASS PWS Study from Acadia
- Share Your Halloween Tips and Tricks for PWSA | USA’s PWS United Podcast
- Ask Nurse Lynn: Urinary Tract Infection in Female Infant
- Getting a Service Dog
- Obtaining and Training a Service Dog
- Service Dog at Home and at School
- Narcolepsy in PWS
- PWS Advocates in Minnesota Meet with Rep. Angie Craig: A Meaningful Step in Advocacy
- Ask Nurse Lynn: Food Anxiety
- PWSA | USA’s Podcast has a New Name!
- Spotlight on Hope: Climbing (Another) Mountain
- PWS Moms’ Hiking Weekend
- FDA Responds to PWS Advocacy Coalition’s Petition on DCCR
- Ask Nurse Lynn: Help with Bowel Movements
- Grandparents Day 2024
- The Importance of Newborn Screening
- FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS
- Ask Nurse Lynn: Medication for Blood Pressure and Anxiety
- Creating a Safe Home
- PWS United Podcast: How to Listen
- On Grief
- FDA Accepts Application for New Drug DCCR, Moves to Priority Review
- Ask Nurse Lynn: Puberty in Females
- Empowering Heroes: Residential Providers Conference
- Ask Nurse Lynn: Heat Rash
- Introducing PWS Connect: The New Podcast for the Prader-Willi Syndrome Community
- National Nonprofit Day
- Survey Results on the Aging Adult with PWS
- Aging Research in Prader-Willi Syndrome
- Ask Nurse Lynn: Oxygen, Weight Loss, and Adult Doctor
- Anxiety and School
- Ask Nurse Lynn: Burping and Abdominal Complaints
- PWS Advocacy Coalition Submits Petition to FDA for Priority Review of DCCR NDA
- Celebrate National Make-a-Will Month with PWSA | USA: Leave a Legacy That Lasts
- “Less Than No One” A Father’s Battle Cry
- TREND Community Launch Report
- Thank You, Congressional Letter Sign-Ons
- Interdependence
- Ask Nurse Lynn: Bowel Movements and GI Concerns
- Navigating Peer Relationships with Prader-Willi Syndrome
- Ask Nurse Lynn: Testosterone Injections and Hypogonadism
- Growing up Rare
- Ask Nurse Lynn: Getting Back on Track with Weight
- Sibling Relationships
- Ask Nurse Lynn: Confabulation
- PWS Aging Research and Health Update Webinar Series: Comprehensive Insights and Strategies for Caregivers
- Soleno Therapeutics Submits New Drug Application to FDA for PWS Treatment
- Future Planning, College, and Relationships
- Ask Nurse Lynn: Colonoscopy
- Scoliosis Awareness
- Ask Nurse Lynn: Estrogen and Progesterone
- TREND Community
- Staying Safe in the Heat
- Empowering Diversity and Inclusion for the PWS Community
- Ask Nurse Lynn: Behavior Management and IEP
- Traveling Abroad with PWS
- A Night to Remember: The 2024 Clint Hurdle Hot Stove Dinner
- Help Needed: Caregivers of Children with Prader-Willi Syndrome and Repetitive Verbal Behavior
- Connections, Education, and Supervision
- Ask Nurse Lynn: Long-Standing Constipation
- Post a Message for Father’s Day
- Embracing Differences | The Journey Behind “It Starts With Hello: Katie’s Story About Prader-Willi Syndrome”
- No Limits
- Ask Nurse Lynn: Procreation and Genetics in PWS
- Fueling Hope: Aardvark Therapeutics’ $85M Boost Powers Breakthrough PWS Treatment
- Nutrition Discourse in the PWS Community
- Rare Disease Advocates Will Unite in Washington, D.C., to Celebrate National Prader-Willi Syndrome (PWS) Awareness Month, National PWS Awareness Day
- Guardianship, SSI, and Feeling Valued
- Preserving Progress: Stand Up for Fully Funding the BRAIN Initiative!
- The PWS Voice of the Patient Report has Been Filed with the FDA!
- Request for Prader-Willi Syndrome Research and Mini-Fellowship Grant Applications
- Ask Nurse Lynn: G-Tubes for Infants
- The Great Blizz
- Breaking Ground: FDA Grants Breakthrough Designation for PWS Drug Development
- Calling All PWS Community Members: Sign the FDA Petition
- A Letter to Friends and Family
- Reflections on The Rare Aware Art Share
- Ask Nurse Lynn – When to Start Growth Hormone
- Volunteers of PWSA | USA
- Ask Nurse Lynn: Supportive Grandparents
- Invitation to Participate in Prader-Willi Syndrome Awareness Initiative
- Supporting Siblings
- Conversation with a Sibling
- Harmony Biosciences Initiates TEMPO PWS Study
- Ask Nurse Lynn: Temperature Abnormalities
- Cruising with Grace
- Spotlight on Advocacy: Own Your Story
- Scholarship for Adults with Rare Diseases
- How Family Support Can Help Your Family
- Ask Nurse Lynn: Mentsruation and Hormone Support
- Neurodiversity and Prader-Willi Syndrome
- Ask Nurse Lynn: Weight Loss Medications
- Interactive Map for PWS Families in the Pacific Northwest
- Tips for First Time Sleep Studies
- Ask Nurse Lynn: Excessive Daytime Sleepiness in School
- Donor Spotlight: Your Journey Team (powered by AMR Real Estate Indianapolis)
- How To Travel with Refrigerated Medication
- 2025 International PWS Conference Announcement!
- Ask Nurse Lynn: Anxiety and SSRIs
- New PWS Clinical Study: Free Informational Webinar with Harmony Biosciences
- Nutrition in the PWS Family
- Ask Nurse Lynn: Birth Control and Hypogonadism
- Spotlight on Hope: Mira and the Bee
- PWS Mom, Staff Member Melanie McDonald Spreads Awareness Through Local Library Donation
- Ripple Effect: Advocacy in the PWS Community
- Pitolisant Receives Orphan Drug Designation
- Neuren Pharmaceuticals Opens Third Trial Site for Phase II PWS Study
- Gratitude for Caregivers on National Caregivers Day
- Maintaining Goal Weight
- Unlocking Potential: Harnessing Strengths to Transform Behavior Webinar
- Advocacy in Action Heading to Rare Disease Week
- Empowering Hope: Kayla Day’s Journey as a PWS Advocate
- Awarding Advocacy
- Movement and Motivation
- Ask Nurse Lynn: Cataplexy
- PWSA | USA Now Hiring for Director of Accounting, Development Specialist Positions
- PWS Parenting Hacks
- Neuren Pharmaceuticals Opens Second Trial Site for Phase II PWS Study
- PWS Mom Advocates for Wisconsin Legislation to Lower Treatment, Therapy Costs for Individuals Living with Rare Diseases
- Meditation, Mindfulness, and Self-Care
- When Friends Turn Into Family
- Exercise, Movement, and Mental Health
- 2024 D.C. Fly-In Application Now Available!
- Here’s How YOU Can Support PWSA | USA’s Advocacy Initiatives in 2024
- Introducing the Rare Aware Art Share
- Journaling as Therapy
- Hope in the Journey
- Looking Ahead
- Happy Holidays from PWSA | USA!
- Celebrate Holidays Safely
- Managing Holiday Expectations
- December has Been Another Exciting Month for PWS Advocacy!
- PWS State Qualifier Campaign Update in West Virginia
- Supporting the Community Through Training
- Spotlight on Hope: Madison Nicole, 21, Living with PWS
- Locking the Fridge, Community Stories
- Spotlight on Hope: Sharon, Leora Saacks Share Loved One Andrea’s Journey with PWS
- Joint Legislation Filed to have PWS Recognized as a Developmental Disability in Ohio
- 2024 DC Fly-In Hotel Announcement and Application Release Date
- New PWS Children’s Book Now Available for Pre-Sale!
- Acadia Pharmaceuticals has Announced the Initiation of its Phase 3 Study for Nasal Carbetocin to Treat Hyperphagia
- Adoption Spotlight: 9-Year-Old Boy Living with PWS in Philadelphia is Seeking a Loving Foster Family
- Holiday Gift Ideas: Sensory Edition
- Simple Self-Care
- Simple Ways to Adjust Recipes for Prader-Willi Syndrome
- YOU Can Help Make an Impact by Giving Twice the Good on Giving Tuesday
- Food Security on a Budget
- Spotlight on Hope: I AM Jacob Zavitz
- 2023 Operation Holiday Cheer Applications Now Being Accepted
- Give the Gift of Hope During PWSA | USA’s 2023 Angel Drive Campaign!
- Looking for a Way to Get Involved? PWSA | USA is in Search of a Volunteer Treasurer
- PWSA | USA Announced as Harmony Biosciences’ 2023 Patients at the Heart Grant Recipient
- PWSA | USA Advocates will Participate in Groundbreaking Opportunity for PWS Community!
- PWSA | USA Volunteer Advocates Jen Garzia and Charles Conway Jr. Share Presentations at Harmony Biosciences Conference
- Spotlight on Hope: The Story of George
- Pitolisant Shows Positive Secondary Outcomes in Phase 2 Study
- Acadia Pharmaceuticals Unveils New COMPASS PWS Study Website
- Freya’s Spotlight on Hope: The Climb
- Harmony Biosciences Reveals Encouraging Data from Phase 2 Pitolisant Study in PWS Patients
- Halloween Fun for Everyone
- Joint Announcement: FPWR Partners with PWSA | USA to Provide BOSS Social Skills Groups for Teens and Adults with PWS
- Tips and Techniques for a Safe Holiday Season
- Healthy Holiday Recipes
- Celebrate Thanksgiving Safely
- Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome
- Calling All New Englanders! Support PWSA | USA at the 14th Annual Hunter Lens Golf Tournament
- Transformative Tales: Empowering Families Dealing with Prader-Willi Syndrome Through Food Security
- Neuren Pharmaceuticals is Happy to Announce the First Site Participating in Their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is Now Open for Screening!
- Harmony Biosciences Issues Statement Regarding Confidence in Pitolisant Drug
- 2023 Moms’ Retreat Attendees Selected!
- Help Rare Disease Research Efforts by Sharing Blood, Urine Samples with PWS-COMBINEDBrain Biorepository
- Aardvark Therapeutics Announces FDA Pediatric Disease Designation for PWS, Expansion of Phase 2 Clinical Trial
- Get to Know PWSA Egypt and Middle East!
- What is Disenfranchised Grief and How Can PWSA | USA Offer Support?
- PWS Hope United Spotlight: Kissing for a Cause
- How Utah is Enhancing Food Security for Prader-Willi Syndrome Individuals: 2023 PWS National Convention
- Share Your School Lunch Tips
- Harmony Biosciences Announces Plan to Begin Phase 3 Trial for Pitolisant Following Meeting with FDA
- Gedeon Richter Now Recruiting for KITE-PWS Clinical Trial
- Prader-Willi Syndrome Association | USA Announces the Resignation of CEO Paige Rivard and Appointment of Interim CEO Stacy Ward
- Spotlight on Advocacy: PWS Advocate Erin Cooper Carter, PhD Continues to Fight for our Ohio Families!
- Congratulations to PWSA | USA’s 2023 Volunteer Award Recipients
- PWSA | USA’s Hope United Gala Silent Auction is Now LIVE!
- Acadia Pharmaceuticals Announces Next Phase for ACP-101 (Intranasal Carbetocin) After Meeting with FDA
- Harmony Biosciences Shares Positive Data from Pitolisant Study at “SLEEP 2023” Annual Meeting
- Support PWSA | USA During Kendra Scott’s PWS Awareness Month Giveback!
- Better Speech and Hearing Month
- Fundraising Spotlight: AXES FOR HOPE
- A Historic Milestone for the PWS Community: PWSA | USA Receives Joint Congressional Support to Declare May 15th as National PWS Awareness Day
- Harmony Biosciences to Share New Pitolisant Data at “SLEEP 2023” Annual Meeting
- How to Request a Proclamation or Resolution for PWS Awareness Month
- Introducing PWSA | USA’s ECHO® 4 PWS Healthcare Provider Series
- Remembering the Life and Impact of Ken Smith
- Creating a Parent Input Statement for Your Child’s IEP
- Support PWS Families During PWSA | USA’s 2023 Family Support Campaign!
- Harmony Biosciences Shares Statement Regarding Narcolepsy Drug WAKIX
- Nominations Now Being Accepted for PWSA | USA’s 2023 Volunteer Awards
- Convention Spotlight: Julie Casey
- Sharing Our Rare: Sheri & Lyra
- Sleep Disturbances in Prader-Willi Syndrome
- Residential Spotlight: Abilities Midwest in Wisconsin
- Sharing Our Rare: Leslie and Corey Fuller
- Sharing Our Rare: Sue Colon
- PWSA | USA Accepting Convention 2023 Scholarship Applications
- Creating Your Child’s Education File
- Your Voice Matters: Attend the FDA’s Externally-Led Patient-Focused Drug Development Meeting at PWSA | USA’s 37th National Convention
- Call for Volunteer Treasurer!
- Do You Have Questions About the 37th National Convention? We Have the Answers!
- Participate in a PWS Parent, Caregiver Self-Care Survey
- Advocacy in Action Webinar: Arizona State Qualifier Campaign
- Calling all PWS Parents, Siblings, Grandparents, and Caregivers: Send in Your Messages of Hope
- Donor Spotlight: Sujeiri Colon
- Save the Date: 2023 Clint Hurdle Hot Stove Dinner
- Calling All PWS Caregivers!
- Happy Holidays from PWSA | USA!
- Thank You PWS Community for your Advocacy Efforts in 2022!
- Get to Know PWSA | USA’s Educational Training Opportunities
- PWSA | USA 2023 Convention Registration is NOW OPEN!
- Global PWS Registry Shares Data on Living Situations for Individuals Affected by PWS
- Harold J.P. van Bosse, MD FAAOS, Joins Orthopedics Team at SSM Health Cardinal Glennon Children’s Hospital in St. Louis, MO
- PWSA | USA Selected as NFL My Cause My Cleats Charity for Second Time
- Become a PWSA | USA Monthly Donor on Facebook and Your Gift will be Matched!
- Help us Make an Impact on Giving Tuesday
- Spreading the Love for PWS
- Self-Care for Caregivers
- Celebrate the Season of Giving by Becoming a PWSA | USA Selfless Elf
- PWSA | USA Receives Donation from Burlington Stores Foundation
- PWSA | USA to Host FDA Sponsored Program at 37th National Convention
- Denver Broncos Player Spotlights PWSA | USA in NFL’s ‘My Cause My Cleats’ Campaign
- Operation Holiday Cheer Applications Now Being Accepted
- Share Hope + Take Action During PWSA | USA’s 2022 Angel Drive Campaign!
- Harmony Biosciences Encouraged by New Data in Pitolisant Phase 2 Study
- It’s Flu and RSV Season – How to Protect Your Child
- 13th Annual Hunter Lens Golf Tournament
- 2nd Annual Answers for Audrey
- Calling All PWS Caregivers: Participate in a Toilet Training Survey
- Calling All PWS Caregivers: Participate in a Skin Picking Survey
- Free Pilates Sessions for PWS Families in Nevada
- PWSA | USA Announces Keynote Speaker for 2023 National Convention
- Share Your Halloween Tips + Tricks!
- Learn About PWSA | USA’s Newest Resource – Your PWS Financial Guide
- Soleno Therapeutics Announces Start of Randomized Withdrawal Study for PWS Drug DCCR
- Radius Health to Close its RAD011 Clinical Trial
- Recognizing Sleep-Related Symptoms of PWS
- A Look into Camelot Society’s Group Home
- Consider Including PWSA | USA in your Planned Giving
- Residential Placement Opportunity for Adult living with PWS
- National Direct Support Professionals Week 2022
- Harmony Biosciences Recruiting PWS Caregivers, Individuals to Participate in Daytime Sleepiness Interview
- PWSA | USA Receives Support from The Giving Pump
- A Look into The Arc of Alachua County’s Prader-Willi Group Home
- Save the Date: PWSA | USA’s Virtual Sleep Summit
- Radius Health Releases Helpful Resources for SCOUT-015 Trial
- Tell Your US Senator to Vote Against the Reconciliation for Prescription Drug Pricing Legislation
- New Guidances Released for Disciplinary Actions in Schools
- Participate in a PWS Specific Sleep Study
- Get to Know Information and Referral Specialist Sarah Kasaby!
- Get to Know Alterman Family Support Counselor Kim Tula!
- Soleno Therapeutics Provides DCCR Update, Continued Communications with FDA
- PWSA | USA Attends IPWSO Conference in Ireland
- How to Develop Positive Relationships with Your School District
- Get to Know Parent Support Coordinator Kristi Rickenbach!
- Get to Know Family Support Director Stacy Ward!
- A Look into Mainstay Life Services’ Pennsylvania Prader-Willi Group Home
- Learn How to Communicate with Elected Officials and Stakeholders
- Help PWSA | USA Raise Awareness for the Upcoming D.C. Fly-In by Writing an Op-Ed Piece
- Enjoy Summer with this List of Fun Activities!
- PWSA | USA Advocacy in Action: Spotlight on Capitol Hill
- READ: Delores Baker Shares Daughter, Lindsay’s, Success in 2022 Special Olympics Debut
- PWSA | USA Family Support Team Shares Tips to Stay Cool During the Hot Summer Months
- Family Support Spotlight: “They Always Made Me Feel Like There is Hope”
- Kasey Bedard, Ph.D., BCBA-D, IBA Shares Findings from Research Study Funded by PWSA | USA
- Stay Hydrated in Style with PWSA | USA’s Hope United Water Bottles!
- LEVO Therapeutics to Close PWS Drug Trial, Phase III Carbetocin
- PWSA | USA Unveils Exciting New Initiative: PWS Hope United!
- PWSA | USA’s Family Support Program Offers Help + Hope!
- Save the Date: PWSA | USA’s First Ever D.C. Fly-In Event
- RESCHEDULED: Join us for our Next Advocacy in Action Webinar on June 8th!
- A Look into AME Community Services’ Minnesota Prader-Willi Group Home
- Early Intervention: IDEA Part C
- 2022 PWSA | USA Volunteer Summit Recap
- It’s Teacher Appreciation Week!
- The 2022 Giving Challenge is now LIVE!
- Hyperphagia and How it Affects Learning
- PWSA | USA is Getting Ready for our First Annual Volunteer Summit
- National Siblings Day: Joe Gill
- FDA Advocacy in Action Webinar Registration Now Available!
- Clinical Trial Sites Announced for Radius Health’s RAD011 SCOUT-015 Study
- April Advocacy in Action Webinar will Feature Guest Speakers from the FDA
- Saniona Pausing All Clinical Trials for PWS Drug Tesomet Due to Funding Limitations
- Lawmakers Review Several Legislative Proposals Intended to Accelerate Innovation of Therapies, Including STAT Act
- Texas Prader-Willi Association Opens New PWS Group Home
- What Type of Research Matters to You?
- STAT Act to be Discussed in Congressional Hearing – Get in Touch with your Members of Congress!
- PWSA | USA’s 2021 Annual Report
- April Webinar Series to Provide Health Care Advocacy Tools, Resources for PWS Community
- Thank You for Shining a Light on Rare Disease Day!
- Help PWS experts learn more about feeding tube use in PWS
- Global PWS Registry Shares Latest Orthopedic Data for Individuals Living with PWS
- Thank you for Sharing your Rare!
- My Brother Daniel
- PWSA | USA Volunteer Appreciation Award Nominations Now Being Accepted!
- PWSA | USA CEO Paige Rivard Participating in Webinar Alongside U.S. Representatives Ahead of Rare Disease Day
- Prader-Willi Association of New England’s Trivia Night
- PWSA | USA’s Family Support Team Recaps January, February Community Conversations
- Apply to Attend PWSA | USA’s 1st Annual Volunteer Summit!
- Join us for the March Advocacy in Action Webinar with Speaker Maureen Tracey
- Brain Tissue Donation: Honoring Loved One’s Through Hope
- Learn More About Harmony Biosciences Phase 2 Study of Pitolisant for PWS
- Be PWSA | USA’s Valentine!
- February Donor Spotlight
- Harmony Biosciences Now Enrolling Individuals with PWS for Upcoming Clinical Trial
- JAMA Newborn Screening Article: Feasible to Screen for all Chromosome 15 Imprinting Disorders, Including PWS, Using SNRPN Methylation Analysis
- Clint Hurdle Hot Stove Dinner: A Look Back at the Past, Forward to the Future
- Radius Health Shares Information about its Drug RAD011, Upcoming Study in New Fact Sheet
- Soleno Therapeutics Provides Update on DCCR
- Join us for the February Advocacy in Action Webinar with Guest Speaker Guy Stephens
- Levo Therapeutics Receives Complete Response from FDA for its Decision on Carbetocin
- Saniona Launches TM006 Study Website to Advance Testing Efforts for Tesomet, a Drug to Help Individuals with PWS Feel Less Hungry
- Shine a Light on Rare Disease Day!
- National Research Study Seeks Participation from Parents of Adults with Intellectual, Developmental Disabilities
- Donor Spotlight: Rob Lutz
- PWSA | USA Welcomes Two New Staff Members
- Saniona Initiates Phase 2b Clinical Trial of Tesomet for Prader-Willi Syndrome
- PWSA | USA, Let’s Go Fitness Team Up to Provide Free Exercise Opportunity for PWS Individuals
- IPWSO Conference 2022: Call for Abstracts
- Donor Spotlight: Elaine Towle
- PWSA | USA Board Member Clint Hurdle Accepts Position with Colorado Rockies as Assistant GM
- The Chicago School of Professional Psychology is looking for Research Study Participants
- Research Survey Opportunity: Behavioral Supports and Services for Children with Prader-Willi Syndrome
- Giving Tuesday: Here’s How You Can Support PWSA | USA
- Bid on Dozens of Incredible Angel Drive Auction Items
- 8th Annual Clint Hurdle Hot Stove Dinner 2022: Save the Date!
- My Sister Linda
- Donor Spotlight: Michelle Spring
- In the Brain’s Cerebellum, a New Target for Suppressing Hunger
- National Adoption Day: Luke’s Story
- National Adoption Day: Michael’s Story
- Spotlight on Hope: Isaac Davis
- Community Conversation: School Success Toolkits
- Join PWSA | USA’s Advocacy Committee!
- Join PWSA | USA, FPWR in Combined Community Conversation to Discuss FDA Advisory Committee’s Decision on LV-101 Carbetocin Nasal Spray
- FDA Advisory Committee Meeting Outcome: A Message from Paige Rivard, Levo CEO Sara Cotter
- Donor Spotlight: John Lens
- How to Watch the FDA Advisory Committee Meeting
- PWSA | USA End of the Year Clothing Sale is LIVE
- Prolapsed Rectum and Risk Factors in Prader–Willi Syndrome: A Case-Based Review
- Show Your Support for the 2021 Angel Drive!
- PWSA | USA’s 2021 Angel Drive Campaigns Kicks Off November 1st!
- SIGNATURE EXTENSION: Encourage your Congressman to sign Rep. Gottheimer’s letter urging House leadership to oppose the harmful changes to the ODTC!
- World Osteoporosis Day
- PWSA | USA’s Board of Directors Transition
- Community Conversations Webinar: For Families to Discuss Grief and their Fears for the Future
- How Can You Make Sure You Are Heard by the FDA?
- Webinar Opportunity: Advocating for New Treatment for PWS
- Research Opportunity: Project Pathways
- Donor Spotlight: Steve Leightman
- October is National Physical Therapy Month
- Summary of a Streamlined Molecular Diagnostic Approach for Prader-Willi and Other Related Syndromes
- Better Care Better Jobs Act Obtains more Co-Sponsors
- PWSA | USA Announced as Harmony Biosciences’ 2021 Patients at the Heart Grant Recipient
- Use Your Voice to Save the Orphan Drug Tax Credit!
- Community Conversation Recap: For Families to Discuss the Impacts of Dr. van Bosse leaving Shriner’s Hospitals
- PWSA | USA Family and Friends: We Need Your Help!
- Direct Support Professional Recognition Week
- FDA Advisory Committee to Review LEVO’s Carbetocin as a Treatment for PWS
- Community Conversation Opportunity: For Families to Discuss the Impacts of Dr. van Bosse leaving Shriner’s Hospitals
- Soleno Therapeutics Announces Positive Data Showing Continued Significant Improvements in Symptoms of PWS following One Year Treatment with DCCR
- NEW Customizable PWS Health Identification Card!
- Creating Your Child’s Special Education File
- Understanding Gastric Motility and Gastroparesis in PWS
- A Message from PWSA | USA’s CEO Paige Rivard Regarding Dr. van Bosse
- We Are Brave Together
- Show Your Support for the STAT Act!
- Donor Spotlight: Huma Onorato
- Webinar Opportunity: Become an Advocate for PWSA | USA
- The BENEFIT Act Receives New Co-Sponsor in U.S. House of Representatives
- Harmony Biosciences Acquires Asset with Novel Mechanism of Action for the Potential Treatment of Narcolepsy and other Rare Neurological Diseases
- WATCH: Homeschooling Webinar
- The BENEFIT Act Receives Bill Number in U.S. House of Representatives
- August is Gastroparesis Awareness Month
- The Stat Act Receives More Bi-Partisan Support
- Webinar Opportunity | Homeschool: What You Should Know
- Harmony Biosciences adds Cincinnati, OH site to its Phase 2 Clinical Trial
- One Voice, One Message, One Goal
- PWSA | USA and FPWR Share Combined FDA Patient Listening Session Summary
- PWSA | USA Advocates for PWS Community During Rare Disease Week on Capitol Hill
- Radius Health Announces Plans for Global Prader-Willi Syndrome Pivotal Study
- Billions in Funding Allocated to Schools Nationwide to Help Students with Disabilities
- Brooklyn’s Story
- Josephine’s Story
- Make Your Voice Heard During Rare Disease Week
- Soleno Therapeutics Provides Update on DCCR for the Treatment of PWS
- FDA Grants Priority Review for Levo Therapeutics’ New Drug Application for LV-101 (Intranasal Carbetocin) for the Treatment of Prader-Willi Syndrome
- PWSA | USA and FPWR Share Community Update on FDA Patient Listening Session
- How to Purchase Convention Raffle Tickets
- 2021 Convention Gear and New PWSA | USA Swag Now Available!
- Dr. Moris Angulo, MD Opens New Clinic in New York
- FPWR and PWSA|USA Request Regulatory Flexibility & Review of NDA for Intranasal Carbetocin
- FPWR and PWSA | USA Announce Upcoming Meeting with FDA
- Jacob’s Story
- Pioneers in Advocacy for Special Education
- How to Log In to the 2021 National Convention Virtual Attendee Hub
- Hunter’s Story: Our Happy Boy!
- Announcing the 2021 Virtual National Convention Agenda & Keynote Speakers
- Noelle’s Story
- PWSA | USA Expands Capacity to Serve With Transition of the Prader-Willi Care Coordination Program from The Children’s Institute of Pittsburgh
- Pioneers in Support – Crisis Intervention Counselors
- #HopeIsHere – Ethan and Mason
- #HopeIsHere – Conner
- #HopeIsHere
- Pioneers in PWS – The Delegates to IPWSO
- Teacher Appreciation Week
- Harmony Biosciences is seeking people with PWS between the ages of 6 – 65 to enroll in Clinical Trial
- Pioneers Who Cared for Persons with PWS in Medical and/or Psychiatric Crisis
- Pioneers Devoted to Educating and Supporting Residential Care and Education Professionals
- Pioneers in PWS – The Parent Mentoring Program
- An Update on the Status of DCCR from Soleno Therapeutics
- Pioneers Who Served PWSA | USA – Board Members and Officers
- April is Occupational Therapy Month: It’s Time to Celebrate the OTs in Your Life!
- Sleep Disturbances in Prader-Willi Syndrome
- Leading PWSA | USA; Our Executive Directors
- The Power of Parents: Gene and Fausta Deterling, Part Four in a Series
- Good News is Found in Path for PWS: A Family’s Story of Hope
- Pioneers in Obesity Prevention (And More); Part 3 in a Series
- Supporting Individuals with Prader-Willi Syndrome During the Pandemic
- Prader-Willi Syndrome Association Announces First Virtual Convention
- Our First Pioneers to Identify Prader-Labhart-Willi Syndrome: Dr.’s Zellweger, Prader, Willi and Labhart; Part 2 in a Series
- Pioneers in Prader-Willi Syndrome: Introduction to the Series
- Living and Thriving with PWS (Part 3)
- News Release: Rhythm Wins FDA Approval for Obesity Drug Imcivree
- It’s All Worth It: The Positives of Being a Sibling to Someone with PWS
- Statement from Members of the Clinical Advisory Board (CAB) Regarding People with PWS and COVID-19 Immunization
- Harmony Biosciences Enrolls First Patient in Phase 2 Trial Evaluating Pitolisant For Excessive Daytime Sleepiness in Patients with Prader-Willi Syndrome
- Living and Thriving with PWS (Part 2)
- Respiratory Syncytial Virus in Infants and Children with Prader-Willi syndrome
- Living and Thriving with PWS (Part 1)
- Holidays and Siblings
- Breaking News: PWSA | USA Announces First-Ever Holiday Concert
- Caregiver Appreciation Day Spotlight: PWHO and Latham Centers
- Holidays and PWS Food Security
- Perseverance Against All Odds
- November is Healthy Skin Month: Skin Picking in PWS
- November Gratitude Challenge
- PWSA | USA Introduces Twenty-Four Hour Family Support
- Halloween Fun for Everyone!
- Virtual Learning Tips for Parents
- Mental Health Awareness in Individuals with Prader-Willi Syndrome: Finding and Educating a Mental Health Professional (Part Two in a Series)
- National Make A Difference Day is coming on Saturday, October 24
- Mental Health Awareness in Persons with Prader-Willi Syndrome: An Overview (Part One of Four)
- Five Rules for Incredibly Successful IEP Meetings During the COVID-19 Pandemic
- Recognizing Resiliency: PWSA Chapters in Action
- Nurturing and Triggering Roles of Siblings
- Prader-Willi syndrome and Sleep Disorders webinar
- Major Miracle – A Grandmother’s Story
- National School Backpack Awareness Day
- September Is Newborn Screening Awareness Month
- National Childhood Obesity Week
- PWSA | USA Voices Support for Ally’s Act
- Smart Pens: A Game Change for Students with PWS
- Home Schooling: But What About Socialization? (Part 7 of a Series)
- Siblings and Communication
- A Young Man’s Perspective on Prader-Willi Syndrome: Securing Food
- Managing Gastroparesis Related Stress
- Siblings and Food
- Helping Your Child Succeed in School: Thoughts from a Young Man With PWS
- How Can I Work and Manage My Child’s Education? (Part 6 in a Series)
- Lifestyle Practices to Manage Gastroparesis
- Give Them Your Time: Spend Time with Siblings to Improve Their Well-Being
- What Does a Typical Home School Day Look Like? (Part 5 in a Series)
- Prader-Willi Syndrome Association | USA and the Foundation for Prader-Willi Research Partner for Telehealth Needs Assessment
- Prader-Willi Syndrome Association | USA Announces Outstanding Chapter Awards
- Paige Rivard Joins PWSA | USA as Chief Executive Officer
- Prader-Willi Syndrome and Gastroparesis
- Levo Therapeutics Announces Top-line Results from Phase 3 CARE-PWS Study of LV-101 (Intranasal Carbetocin) for the Treatment of Prader-Willi Syndrome
- Socializing for Adults with PWS During the Pandemic
- Home Schooling: How to Pick Curriculum: What to Use, Where to Get, How to Implement (Part 4 in a Series)
- Sibling Caregivers
- Home Schooling: How Do I Get Services for My Child? (Part 3 in a Series)
- Update on Later Stage Clinical Trials for Prader-Willi Syndrome Hyperphagia
- Grandma Lee: A Poem by Spencer Ginyard
- Home Schooling: But I’m Not a Teacher, How Can I Teach My Children? (Part 2 In a Series)
- Surviving Quarantine as a Sibling
- Help! My kids are Schooling at Home and I don’t Know What to Do!
- Running for Research
- Tips for Improving the Well-being of Siblings of Individuals with Prader-Willi Syndrome: Debriefing
- Surviving Teletherapy
- Visceral Adipose Tissue Resides Within the Reference Range in Children with Prader-Willi syndrome Receiving Nutritional Intervention on a Regular Basis
- Latest Update on the Genotropin Mini Quick shortage from Pfizer Pharmaceuticals
- Soleno Therapeutics Announces Top-line Results from Phase III Trial of DCCR for Treatment of Prader-Willi Syndrome
- Sunshine Means It’s Summertime!
- Exercise: Healthy Fun for Everyone
- Happy Teacher Appreciation Week!
- Volunteer Appreciation Week: Thank YOU for being Part of our CommUNITY!
- 2020 Giving Challenge
- At Home Resources for Families
- Important Information regarding COVID-19
- National Nutrition Month
- Meet Our Hope Hero: Lauren
- Sleep-Related Breathing Disorders in Young Adults With Prader-Willi Syndrome: A Placebo-Controlled, Crossover GH Trial
- Halloween Fun
- National Direct Support Professional Week
- Recruitment: Acceptance and commitment training (ACT) for fathers of adolescents with PWS, a pilot study funded by the Foundation for Prader Willi Research
- The Safety and Efficacy of Growth Hormone (GH) Treatment in Infants with PWS; Findings from Current Research
- A Comprehensive Overview of GI Issues in Prader-Willi Syndrome
- Why You Should Hire Someone with Prader-Willi Syndrome
- Summer Fun
- Narcolepsy as a Characteristic of Prader-Willi Syndrome
- Bringing Hope: A Mother’s Perspective
- A Grandparent’s Perspective
- A Sibling’s Perspective
- PWS Awareness Month – Week 3
- Exercise and Behavior
- PWS Awareness Month Week 2 Mini Blog – Positive Behavioral Support
- PWS Awareness Month Week 2 Mini Blog – Oppositional Behavior
- PWS AWARENESS MONTH WEEK 2 MINI BLOG – Perseverating
- PWS Awareness Month Week 2 Mini Blog – Managing an Outburst
- PWS Awareness Month Week 2 Mini Blog – Behavioral Outbursts
- Prader-Willi Syndrome Awareness Month
- PWS Awareness Month: Week 1
- NUTRITION and HEALTHY LIVING
- 69 Years with Prader-Willi Syndrome and Still Strong
- Easter Fun
- Receiving the Diagnosis
- Tips for Better Sleep
- Tips and Techniques for a Safe Holiday Season
- Applied Behavior Analysis and PWS Part 2: The A-B-C’s of Behavior
- Event: Foundation for Prader-Willi Research Annual Research Symposium and Conference
- PWSA (USA) Launches New Corporate Partners Program
- INDIVIDUALLY WE ARE RARE…TOGETHER WE ARE STRONG: PARENT MENTOR PROGRAM STRENGTHENS PWS COMMUNITY
- APPLIED BEHAVIOR ANALYSIS AND PRADER-WILLI SYNDROME, PART 1: EXPLAINING ABA
- ROSE COLORED GLASSES
- Meet Your Family Support Team
- Managing Behavior
- Grandparents: Make Philanthropy a Family Affair
- Recording of Recent Webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now Available
- LivingHealthy with Prader-Willi Syndrome : Cookbook and Nutrition Tips
- A Mother’s Day Gift
- Advocating for your child in the ER
- Summary Of Active Clinical Trials For Prader-Willi Syndrome Hyperphagia
- Family Thriving Despite Daughter’s Rare Chromosomal Disorder
- Convention Connections: One Mother Shares How the PWSA (USA) Convention Helped Her and Her Family
- Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs
- He’s Still Henry- Our Prader-Willi Syndrome Story
- Diagnoses and characteristics of autism spectrum disorders in children with Prader-Willi syndrome
- Who’s Harder To Raise Boys or Girls?
- Grandparents of Prader-Willi Syndrome Children
- TOO DARN HOT!
- Grayson’s Story
- The Study of Pain in Adults with PWS
- Special Announcement: Oxytocin Phase 2 Study Grant Funded
- Two Research Studies Looking for Participants
- PWSA (USA) ADVOCACY ALERT NETWORK SEEKS MEMBERS
- PWSA (USA) approves grant: Profiling of the gut microbiome in children with PWS
- The Night we told Ryan he has Prader-Willi Syndrome
- Important Medical Growth Charts
- PWSA (USA) Approves Grant
- Warning – Medication combinations may fatally impair breathing in PWS!
- Please Participate in Research on PWS Caregiver Stress
- A PWS Family’s Story
- Exciting News on Carbetocin for PWS!
- A Dad’s Love
- Two New Research Studies
- PWSA (USA)’s Webinar Series Continues: Overview of the New Publication “Transition Planning Resource Guide”
- “Kicking The Can” with PWS
- The Confusing World of Growth Hormone Insurance Coverage and Denials
- Weathering the Storm – A Mother’s Story
- Zafgen’s Letter to PWS Community
- 13 Year Old with PWS Will Be On a Popular TV Show!
- Update: Oxytocin Phase 2 Trial
- New Webinar DVD and Publication
- Telehealth Intervention Research-Case Western Reserve University
- Book Now Available through PWSA (USA)
- PWSA (USA) Webinar: Essential Early Childhood Behavior Management Strategies: Good Foundations Now, Good Behaviors Tomorrow
- Telling the Story of Students with PWS School Data = Understanding
- A Massive PWS Awareness Campaign for Geneticists
- Special Webinar: Learn How You Can Help Transform the Lives of Those with Prader-Willi Syndrome!
- Research Announcement: Report on the Zafgen Meetings
- PWSA (USA)’s Webinar Series Continues
- ZAFGEN’S PIVOTAL PHASE 3 TRIAL OF BELORANIB IN PRADER-WILLI SYNDROME ACHIEVES CO-PRIMARY EFFICACY ENDPOINTS
- PWSA (USA) and Shriner Hospital Partnership
- Help Us Learn More: Survey on Dangerous Condition in PWS
- PWSA (USA) Supports Two New Important Studies!
- Two New Prader-Willi Syndrome Films
- 2015 Holiday Tips
- The Zafgen Clinical Trial Partial Hold
- Noninvasive Prenatal Screening – Testing Now Available For PWS
- PWSA (USA) Joseph McErlane Research Grant
- Oxytocin Phase 2 Study Campaign Reaches Milestone!
- Exciting News: $50,000 Matching Gift Grant for the Oxytocin Phase 2 Study!
- Dr. Miller Phase 2 Oxytocin Trial Webinar
- Prader-Willi syndrome: a review of clinical, genetic, and endocrine findings
- PWSA (USA) Saving Lives in the ER
- Research Funding Opportunities

Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.