We’re thrilled to announce the resurgence of our Rare Aware Art Share campaign in 2026! The Rare Aware Art Share will now be an annual project for PWSA | USA. We will be seeking submissions on specific themes in the beginning months of the new year. This year’s theme is in honor of our upcoming D.C. Fly-In. We are asking individuals with Prader-Willi syndrome to make artwork on the theme of Advocacy and Awareness using the prompts:
How do you advocate for yourself?
How do you bring awareness to your community about PWS?
This art share is open to any and all individuals with PWS. There are no restrictions on age, skill level, or where they are in the world. We welcome all art (as long as it can be sent to us digitally)!
What does “digital submissions only” mean?
Your loved one may choose to draw or paint a picture, create a sculpture with clay, glue together a collage, write a poem or a song, knit a piece with yarn, create a shadow box, etc. the list is as long as their creativity. The only logistical requirement is that you are able to snap a photo and send that in to PWSA | USA. (Poems or song lyrics may be sent using a word document).
Where will this artwork be seen?
The art submissions will be shared virtually on our social media pages and in an art gallery on our website. A video showcasing these submissions will be made for YouTube and available to show are various awareness events during PWS Awareness Month in May. All or select pieces will be used in print material for various events at the D.C. Fly-In.
Why are there questions with the submission?
If you scroll down to the form, you’ll notice a series of questions you and/or your loved one can answer. Only the questions with the red star are required. There are also questions for your loved one to answer about their journey with PWS. We want to get to know your loved one with PWS and help them to feel comfortable sharing their story with the community and the world beyond. In this, we hope to bring better awareness and further advocacy efforts. Individuals living with PWS have valuable experiences and voices that deserve to be heard. This art share is meant to be a creative place for them to do so.
Tell me more about the theme.
We invite individuals living with PWS to show what advocacy and awareness look like in their lives – big or small, public or personal. If you are the parent of caregiver helping a loved one with PWS, or are an individual with PWS, take a moment to reflect on what advocacy and awareness means.
Advocacy is the act of supporting a cause and speaking up for what matters.
Awareness is helping others understand a situation, experience, or reality.
Not everyone makes a trip to Washington, D.C. or their state capital to advocate for policy. Sometimes advocating looks like demanding better food security at a group home or reminding a teacher that supervision is required during meals. Awareness may be speaking about PWS at a big event or sharing your story with a classmate or community member.
There is no “right” way to advocate or raise awareness. Every voice matters, and every action counts.
How do I submit?
Once the artwork is submitted, take a photo, fill out the form below, and upload the photo. Artists may create and submit more than one piece of art with a form. Please fill out as many questions as you or your loved one are willing to share.
Remember, the submission period is January 15 – March 15. (If you’re reading this early and want to submit before January, go for it!) For printing purposes, submissions must be in by March 15.
We were incredibly impressed with the array of inspired artwork from our 2024 Rare Aware Art Share and are looking forward to seeing and enjoying the submissions for 2026. Thank you to all of the artists, past and present, for sharing your story, your creativity, and your voice with this community!
“We are all artists, and we all have beauty to share.”
―
Submit to Rare Aware Art Share Below:
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.
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.
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.
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.
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.