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...
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...
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...
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...
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 – 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 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 – 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....
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...
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 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...
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...
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...
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...
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...
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...
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...
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...
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 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...
In honor of October being National Mental Health Awareness month, we are presenting a 4-part series on supporting and caring for a person with PWS who is facing a mental health diagnosis. According to the National Alliance on Mental Illness (NAMI), mental illness is “a condition that affects a person’s thinking, feelings, behavior or mood....
When you receive a call, letter, or email inviting you to an IEP meeting, does your mood change? Do you get a knot in your stomach? Anxious? Confused or inadequate (the “I’m just a parent” syndrome)? Do you have a clear sense of your role in an IEP meeting? Do you have questions about what...
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...
Sibling relationships with their family member with Prader-Willi syndrome (PWS) are very complex. As one sibling said, “it is a love-hate relationship.” Research shows almost all siblings have an intense love for and an endearing relationship with their sibling with PWS. Many siblings describe their relationship with their sibling with PWS as their most special...
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.
Over the years, as a special-needs parent navigating the Special Education system for Sophie, Jennifer became interested in learning as much as possible about that process. She began by attending PWSA (USA)’s first Wyatt Special Education Advocacy Training in March of 2013, and went on to complete a rigorous 9-month Special Education Advocacy Training course with the Council of Parent Advocates and Attorneys in May of 2015. This included successfully completing an advocacy internship with PWSA (USA). Jennifer is referred school cases by PWSA (USA)’s Family Support Counselors, and then works closely with parents and schools to review education records, assess the child’s situation at school, provide further information about how the syndrome affects the school experience, and, as needed, create improved IEPs and behavioral plans. Jennifer was excited to take on this role of helping parents in the PWS community to work collaboratively with school professionals and parents to create positive, effective learning environments for children with PWS across the country. Jennifer is a graduate of the WSEAT program.
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.
Past president of the Education Law Association and co-chair of the Pennsylvania special education appeals panel from 1990 to 2007, he is the author of the CEC monograph The Legal Meaning of Specific Learning Disability; the more recently published books, A Digest of Supreme Court Decisions Affecting Education and Student Teaching and the Law; and the two-volume reference Section 504, the ADA and theSchools, now in its fourth edition. In 2012, he received Research into Practice Award from the American Educational Research Association (AERA) and the Excellence in Research Award from AERA’s Division A (Administration, Organization & Leadership). In 2013, he received the University Council for Educational Administration’s Edwin Bridges award for significant contributions to the preparation and development of school leaders. In 2016, he received the Education Law Association’s Steven S. Goldberg Award for Distinguished Scholarship in Education Law, and in 2017 he received the Council for Exceptional Children’s Special Education Research Award. Note:Perry’s website is perryzirkel.com
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.
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.
She obtained her PhD from Capella University in Education focusing her research on Prader-Willi Syndrome. Dr. McTighe is also a graduate of the William & Mary Law School’s Institute for Special Education Advocacy. Dr. McTighe is currently the chair of the Special Education Advisory Board for the Prader-Willi Syndrome Association-(USA). Amy is the Chair of PWSA (USA)’s Special Education Advisory Board.
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.
Staci Zimmerman has lived in Denver, CO for the past 17 years. She lives with her husband and 5 year old daughter. Staci attended The University of Kansas, with a B.A in sociology and an M.ed in Special Education, with an emphasis in Autism Spectrum Disorder. Staci enjoys teaching fitness classes, and keeping a healthy, active lifestyle in Colorado.
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.
Before founding SDLC, Jim was the Executive Director of Advocacy, Inc., the Texas Protection and Advocacy program from 1989-2001. During that period, he managed the growth of the program from 34 staff to a staff of 94 and from a centralized operation with one office to a regionalized operation with eleven offices spread across Texas.
From 1981-1989, Jim worked for the Advocacy Center for the Elderly and Disabled (Louisiana’s Protection and Advocacy program) as its Legal Director. From 1979 to 1981 Jim worked as a staff attorney for the Louisiana Center for the Public Interest.
Jim graduated from Tulane University School of Law in 1977, and has a BA in Accounting & Economics from the University of Puget Sound.
Jim is the author of publications and training materials on the IDEA, the ADA, and Section 504, including: Keeping Students with Disabilities in School: Legal Strategies and Effective Educational Practices for Preventing the Suspension of Students with Disabilities – A Resource Manual (2014); Stopping the Schoolhouse to Jailhouse Pipeline by Enforcing Federal Special Education Laws (2006), co–authored with Rhonda Brownstein from the Southern Poverty Law Center.
Jim has served as lead or co-counsel in several major IDEA actions in Texas, Louisiana, and Mississippi on behalf of thousands of students with disabilities, including Angel G. v. Texas Education Agency; Luke S. v. Louisiana Department of Education and Mattie T. v. Mississippi Department of Education. The past decade, he also filed and favorably settled five systemic administrative complaints in Louisiana, Mississippi, and Florida. These systemic complaints were filed under IDEA’s state complaint procedures.
Jim has also made over two hundred presentations at statewide, regional and national conferences on IDEA, Section 504, and ADA issues. The past four years he has also served as one of the faculty members at William and Mary Law School’s week long Institute on Special Education Advocacy.
