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Posts
- 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
- Halloween Fun for Everyone!
- 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