The leadership in an organization is one of the most important elements to achieving long-lasting success. It is important for this individual to be passionate, knowledgeable and organized. They must be a team builder as well as build and maintain alliances. They must be vigilant in making sure there are the proper resources to maintain...
The Power of Parents: Gene and Fausta Deterling, Part Four in a Series
You may not know Gene and Fausta Deterling, but they changed your life and the life of your child with PWS. “Curtis has Prader-Willi syndrome.” The Deterlings stared at their doctor in disbelief when they heard those words in 1971. Gene was an engineer and a manager, a problem solver. “Can’t we do something?” That...
Good News is Found in Path for PWS: A Family’s Story of Hope
When our son, Robert, was born almost thirty-one years ago, we had no diagnosis. Seven years later a new blood test confirmed Prader-Willi syndrome. It was not a good day for our family, and from what I understand, it is not a good day for any family (then or now) facing a new diagnosis. I...
Pioneers in Obesity Prevention (And More); Part 3 in a Series
We always admire professionals who have found a special place in their heart to study, research, educate and care for persons with PWS and their families. Dr. Vanja Holm and Peggy Pipes MRH, RD, were two of those remarkable people and examples of some of the earliest pioneers who exemplified this. Dr. Holm graduated from...
Supporting Individuals with Prader-Willi Syndrome During the Pandemic
The pandemic has been a mixed bag for the PWS community. For some individuals, mental health has suffered, isolation has increased, and opportunities for engagement and inclusion have been limited. For others, former anxieties and struggles have been alleviated, and new hobbies and interests have developed. There are fewer opportunities to access food, but also...
Prader-Willi Syndrome Association Announces First Virtual Convention
FOR IMMEDIATE RELEASE: January 14, 2021 Sarasota, Florida: Prader-Willi Syndrome Association | USA (PWSA | USA) is pleased to announce its upcoming 36th National Convention is moving to an all-new virtual format. Due to the ongoing health concerns brought forth by the COVID-19 pandemic, the organization will provide members of the Prader-Willi syndrome community with a variety...
Our First Pioneers to Identify Prader-Labhart-Willi Syndrome: Dr.’s Zellweger, Prader, Willi and Labhart; Part 2 in a Series
Dr. Hans Zellweger was a tall, adventuresome doctor from a patrician family in Chur, the oldest town in Switzerland. After seeing the devastating effects of polio after World War I, his life goal was to understand neuromuscular disorders in children. After training across Europe, and working with Dr. Albett Schweitzer in Africa, he became chief...
Pioneers in Prader-Willi Syndrome: Introduction to the Series
It’s hard to imagine a time when you couldn’t pick up your phone or computer and do a “search” for information, resources and/or support on PWS. Or a time when there were no organizations, homes, conferences devoted to advancing research, education and awareness about PWS. A time when there was little to no research to...
Living and Thriving with PWS (Part 3)
Living and Thriving with PWS – Love, Faith, and Future Grace By Derek Montecalvo One day, at the residential home in Barnstable where I was living, there was a commotion outside as staff and residents transitioned a new resident into his room. A beautiful young woman happened upon my doorstep during this transition. The...
News Release: Rhythm Wins FDA Approval for Obesity Drug Imcivree
Rhythm Pharmaceuticals Inc., a company developing medicines for rare genetic disorders of obesity, has won FDA approval for its first product, Imcivree (setmelanotide), following a priority review. The drug is designed to restore a biological pathway that, when disrupted, can lead to constant hunger. The approval covers the treatment of three types of ultrarare early...
It’s All Worth It: The Positives of Being a Sibling to Someone with PWS
Being a sibling to an individual with Prader-Willi syndrome (PWS) is a remarkable experience. Almost all interviewed siblings agree that the positives of being a sibling to someone with PWS outweigh the negatives and are grateful to have the member with PWS in their family. Almost all the siblings we interviewed have an intense love...
Statement from Members of the Clinical Advisory Board (CAB) Regarding People with PWS and COVID-19 Immunization
The types of vaccines now available against COVID-19 use mRNA technology. This type of vaccine has been under development for many years and, unlike other immunizations, does not place a weak or inactive germ into the body, but instead teaches cells in our body to make an immune response that then produces antibodies which provide protection if...
Harmony Biosciences Enrolls First Patient in Phase 2 Trial Evaluating Pitolisant For Excessive Daytime Sleepiness in Patients with Prader-Willi Syndrome
PLYMOUTH MEETING, PA and CHICAGO, IL, December 15, 2020 — Harmony Biosciences Holdings, Inc. (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients living with rare neurological disorders who have unmet medical needs, today announced the first patient has been enrolled in a Phase 2 trial evaluating the safety...
Living and Thriving with PWS (Part 2)
Living and Thriving with PWS – The Transition to College By Derek Montecalvo The transition to college was stressful. When I moved onto campus, I avoided added stress by using the campus dining hall, and I would shop weekly with my mom to buy groceries to store in my room inside of a mini-fridge...
Respiratory Syncytial Virus in Infants and Children with Prader-Willi syndrome
Respiratory illness in persons with Prader-Willi syndrome (PWS) can be extraordinarily complicated and the course of the illness is often more serious than it is for others. Pronounced hypotonia in PWS is a significant risk factor for respiratory illness with severe complications. In a recently released study by Dr.’s Miller and Thornton, parents of children...
Living and Thriving with PWS (Part 1)
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....
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 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 and...
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...
PWSA | USA Introduces Twenty-Four Hour Family Support
For Immediate Release PWSA | USA Introduces Twenty-Four Hour Family Support [Sarasota, Florida, October 30, 2020] 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 is...