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 Montecalvo....
Category: Blog
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 already...
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 | USA...
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 the...
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 experience...
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 the...
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 away by how...
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 answer...
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 a...
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 or...
National Make A Difference Day is coming on Saturday, October 24
National Make A Difference Day is coming on Saturday, October 24 Established in 1992, this “national day of doing good” promotes the idea of volunteering as a positive and heartwarming event and emphasizes the impact that volunteering can have on one’s own community. While it originated in the United States, it is now observed in...
Recognizing Resiliency: PWSA Chapters in Action
While some organizations have scrambled to figure out how to continue their daily operations during the coronavirus pandemic, PWSA Chapters across the country are leading the way with unique virtual event experiences. Here are some original ideas that PWSA Chapters have been doing to keep the PWS community connected virtually: The Prader-Willi Syndrome Association...
Prader-Willi syndrome and Sleep Disorders webinar
Title: Prader-Willi syndrome and Sleep Disorders Date: Saturday, September 26 Time: 11:00 AM to 1:00 PM Eastern / 10:00 AM to 12:00 PM Central / 8:00 AM to 10:00 AM Pacific Description: Join us for this comprehensive and collaborative live webinar to better understand how sleep issues may be related to the symptoms of Prader-Willi...
Major Miracle – A Grandmother’s Story
“The test kept coming back normal. Lord, we are happy everything is coming back normal but there is something wrong.” This is the first thing that comes to mind when I think about those first days of Major’s life. Major is the first child for my daughter and her husband. Her pregnancy was uneventful but...
National School Backpack Awareness Day
Backpacks have become as fundamental to the school experience as No. 2 pencils and an apple for the teacher. And when used properly, they are extremely useful, reducing neck, shoulder and back strain by distributing weight evenly. Unfortunately, muscle strain can happen if the backpack is too heavy or carried by a single shoulder strap,...
September Is Newborn Screening Awareness Month
What is newborn screening? Newborn screening is one of the most successful public health programs ever enacted, saving thousands of lives over the past 50 years. Newborn screening allows physicians to catch rare genetic conditions at birth and start treatment almost immediately following birth; it enables efficient diagnosis and access to treatments that can save...
National Childhood Obesity Week
With childhood obesity presenting a significant threat to child health, the American Academy of Pediatrics (AAP) is recognizing National Childhood Obesity Awareness Month during the month of September. Early recognition and treatment of obesity has advantages. As we know in the PWS community, it is a daily struggle for most of our families. The AAP...
PWSA | USA Voices Support for Ally’s Act
Ally Tumblin, a fourth grader in Colorado, was born without a right ear and ear canal, a condition known as Microtia Atresia. The only way she can hear is a with a specialized bone-anchored hearing device that costs between $5,000-30,000… and none of it is covered by insurance. Ally, motivated to change the law and...
Smart Pens: A Game Change for Students with PWS
In the earlier years of my educational journey, I struggled in school. I was falling behind in my classes, asked a lot of questions, missed taking all of my notes down, always needing one on one assistance, and was slowing down the class due to the teacher having to repeat what he had said so...
Home Schooling: But What About Socialization? (Part 7 of a Series)
Ask any homeschooling family and they will tell you that the number one question when someone finds out they home school is “but what about socialization?” I often tell people that if we took advantage of all the opportunities to socialize, we would never get any lessons done. Right now, with everyone across the country...
Siblings and Communication
Communication is key in any family and is especially important in a family impacted by Prader-Willi syndrome (PWS). Experts believe that open, clear, and frequent communication is necessary for healthy family functioning (Green & Peterson, 2019). Research shows that most parents have sparse conversations with their children about what it is like to grow up...
A Young Man’s Perspective on Prader-Willi Syndrome: Securing Food
A big help for me is having the refrigerator and pantry locked twenty-four hours a day, seven days a week. Having the pantry and refrigerator locked reduces my anxiety in or around those areas of the house. By implementing the lock-up tip, you will help keep your child healthy and minimize health issues. My own...
Managing Gastroparesis Related Stress
It is common to feel sad or discouraged when you are trying to manage a chronic condition like gastroparesis. Like Prader-Willi syndrome, gastroparesis is a multi-faceted condition and must be approached from a variety of angles. A combination of medical treatments, complementary therapies, adequate nutrition, proper dietary modifications, a positive attitude, and supportive lifestyle practices...
Siblings and Food
Food restrictions in the home, although necessary for the safety and health of the family member with Prader-Willi Syndrome (PWS), can negatively impact siblings. The constant need to lock food adds intense stress and worry to siblings on several levels. For example, if the sibling forgets to lock access to food, this could result in...