Living and Thriving with PWS – The Early Years By Derek Montecalvo Hi, my name is Derek Montecalvo and I’m a 30-year old young adult with Prader-Willi Syndrome. I was diagnosed when I was very little via bloodwork. My parents are Gregory and Sharon Montecalvo, and I have an older brother named Aaron...
Holidays and Siblings
The holidays, usually filled with excitement and family connection, often mean something completely different for families with a member with Prader-Willi Syndrome (PWS). Exorbitant amounts of food, continual interruptions to the normal schedule, and extended social interactions add stress for the individual with PWS and the entire family. Siblings of individuals with PWS are...
Breaking News: PWSA | USA Announces First-Ever Holiday Concert
PWSA | USA Presents “Hope for the Holidays” Virtual Concert FOR IMMEDIATE RELEASE Sarasota, Florida – Prader-Willi Syndrome Association | USA is thrilled to announce its first-ever benefit concert, Hope for the Holidays. The virtual event premiers on YouTube and Facebook live on December 13, 2020 and will help raise funds for PWSA |...
Caregiver Appreciation Day Spotlight: PWHO and Latham Centers
Caregiver Appreciation Day Spotlight: PWHO and Latham Centers Today is Caregiver Appreciation Day and PWSA | USA is recognizing the home health aides, nursing home attendants, counselors, doulas, respite nurses, and volunteers who choose to offer their time to helping others for their (largely selfless) efforts. The individuals who provide care services to...
Holidays and PWS Food Security
Food Security: Planning for the Holidays, Family Gatherings and Parties Holidays, family gatherings, parties and FOOD go hand in hand. With thoughtful planning and proactive preparation, these events can be successful, healthy experiences for everyone. It’s important that everyone is prepared and knows the game plan. Without a plan, the person with PWS may...
Perseverance Against All Odds
In commemoration of Diabetes Awareness Month, contributing author Kelly Guillou, mom of Clementine (10 years old with PWS-UPD and T1D), shares her unique view on what it means to persevere in the face of two rare disorders. Perseverance is my favorite word. To me, it is the ability to push ahead, despite challenges, because...
November is Healthy Skin Month: Skin Picking in PWS
Skin picking (also known as Dermatillomania) is one of the most challenging behaviors to manage and minimize in individuals who have Prader-Willi syndrome (PWS). Though not everyone affected by the syndrome will struggle with skin picking, the behavior is thought to impact 80% of those who do. It can be very severe for some...
November Gratitude Challenge
When I reflect on my connection and gratitude toward another person in relation to PWS, Cheri Wood comes to mind. As founding members of the Texas Prader-Willi Association about 12 years ago, we share a similar passion for the well being and future of those with PWS. I was (am) dumbfounded by the challenges this disorder presents. I’m blown...
PWSA | USA Introduces Twenty-Four Hour Family Support
For Immediate Release PWSA | USA Introduces Twenty-Four Hour Family Support Prader-Willi Syndrome Association | USA (PWSA | USA) announced today it will begin providing 24-hour Family Support services to individuals and families in the Prader-Willi syndrome (PWS) community. “The past year has been challenging for everyone, and this...
Halloween Fun for Everyone!
Children, and many adults, look forward to Halloween with great anticipation…Bags full of sugary treats, scary decorations, and the thrill of trick or treating with friends and family…What could be more fun? But, what do you do for Halloween when your loved one has Prader-Willi syndrome? Can they safely participate in the festivities? The...
Virtual Learning Tips for Parents
Students have been participating in virtual learning for months now, and families and educators are themselves learning what works and what does not. Parents, especially parents of students receiving special education supports, are taking on more responsibility for their child’s learning than ever before. However, the (public) school district is still responsible to provide...
Mental Health Awareness in Individuals with Prader-Willi Syndrome: Finding and Educating a Mental Health Professional (Part Two in a Series)
Finding a mental health professional who has experience working with individuals with Prader-Willi syndrome can be challenging. The following are some suggestions to help you with your search: Talk to your primary care provider. She or he might be able to recommend one or more clinicians who are familiar with PWS. Call your state...