“We are all artists, and we all have beauty to share.” ― Laura Jaworski
As parents, caregivers, and advocates, we grow accustomed to speaking up for our loved ones with PWS. At every doctor office or IEP meeting, every time they start a dance class or join a team sport, before sleepovers with friends or perhaps the neighborhood BBQ, we must be ready to state the facts, the concerns, and the protocol required for their safety.
The voices of our loved ones may become muted by the recitations of this PWS script, their creative and artistic personality buried under facts, treatment plans, stool charts, and algorithms. We know their challenges, their dietary restrictions, the tendencies dictated by chromosomal abnormalities. But when do our loved ones get to speak about who they are to a large audience? When do they get to step out of their prescribed genetic context and show themselves?
Our Intentions
Our Rare Aware Art Share aims to do just that! This virtual art show gives the proverbial stage to those living with PWS to share their artistic voice with the world, whether that be through drawing, painting, knitting, song writing, photography, poetry, and more. We asked for submissions from all individuals with PWS of all ages from all over the world. We included some voluntary questions to give each person the chance to tell us more about themselves, what inspires their art, and what they want people to know about them.
The submissions did not disappoint!
We were incredibly impressed with the submissions we received for our first theme, “What is your superpower?” We are grateful for the art created, the honesty and insightfulness of the answers, and the willingness to share with the PWS community and beyond. Here are just a few samples of what our artists had to say about themselves.
Monique Smartt, 21, “I am smart and beautiful.”
Kyle Gallagher, 38, “I like to be challenged and experiment with new things. I want people to know that even people with PWS or a disability can do anything they put their heart to…”
Nilo Mohadjer, 18, “I am creative and love all the bright colors. It makes me feel good to make art for people.”
William Thomas, 15, “I like to run, swim, fish, and paint. I love to give my paintings to other people to make them happy.”
How to View the Art
Follow PWSA | USA on Instagram or Facebook to see the Artist Spotlights during PWS Awareness Month in May. Each artist will be represented with their art submissions and a bit of their written responses. You can also visit our virtual Rare Aware Art Share Gallery to view the submissions and read all of what the artists shared with us. Some submissions will be displayed at the United in Hope International PWS Conference in June of 2025.
Wear and Share the Art
Another exciting element of the Rare Aware Art Share is the opportunity to create more art with the art. We have created a Printify Pop-Up store, Rare Aware Art Share, where you can create a product designed with the art piece of your choice. You can include an art piece on a variety of products like shirts, hoodies, journals, puzzles, coffee mugs, bags and more. Prices are based simply on production and shipping. No profit is made by either PWSA | USA or the artist. Check out our Rare Aware Art Share Store HERE.
The Art Share Continues
The Rare Aware Art Share will continue throughout 2024 with two more themed submission periods. Theme #2, “What is something unique or special about where you live?” was inspired by our preparations for the 2025 United in Hope International PWS Conference. We will display the art submissions to share artistic insights into the homes and lives of families gathering from around the world. We will take submissions for this theme starting July 1 and continuing through August 15. To learn more and submit your loved one’s artwork, visit our FAQs and Submission page HERE.
Thank You Artists!
In the words of Aristotle, “The aim of art is to represent not the outward appearance of things, but their inward significance.” It has truly been a gift to glimpse the artistic thoughts and visions of our loved ones with PWS. We are grateful for their willingness to create and to share and we look forward to experiencing more art submissions in the future. Thank you, artists!
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.
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.
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.
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.
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.