Rare Aware Art Share Gallery
We are excited to share the artwork submitted for PWSA | USA’s Rare Aware Art Share! This virtual art show aims to spotlight the voices of individuals with Prader-Willi syndrome. We hope these pieces offer an opportunity to learn more about each individual, their lives, and their experiences as someone with PWS. Through this virtual art show, our community and beyond can gain a deeper understanding of our loved ones with PWS, while offering them a space to be seen and heard.
To learn about current Rare Aware Art Share submission opportunities, please click HERE.
What's something unique
about where you live?
Artist
Nicolle, 36, Colorado
I used a program called procreate, to create this digital painting, using layering, masking, and watercolor techniques.
- Inspiration: I wanted to capture the view of the stunning front range of the Rocky Mountains from Denver, Colorado.
- What I wish people understood about Prader-Willi syndrome: I think people often don’t see the many things I struggle with, it’s easy for people to assume my struggles with my weight, or easily getting fatigued are from lack of will power, or just being lazy.
- What I want people to know about me: On the flip side, despite the challenges and struggles I’ve had and continue to deal with because of PWS, they’ve also made me who I am. Everyone has their own challenges in life, and this one is mine. I don’t want to be felt sorry for. My life may look different, but it’s beautiful and full.
Artist
Jessie Siles, 34, Mass, 1 p
He was at the day program.
- Inspiration: School Staff
- What I wish people understood about Prader-Willi syndrome: That we are special angels.
- What I want people to know about me: I’m a gift from God.
Artist
Conner Kloesel, 9, TX, 1 piece
I painted it on a canvas. I painted a cat with glasses like me.
- Inspiration: My love for cats.
- What I wish people understood about Prader-Willi syndrome: The diets and portion control are hard mentally.
- What I want people to know about me: That I try my best in everything I do.
Artist
Lyra Mills, 6, WV, 3 pieces
This pieces explains what it’s like living on the side of the blue ridge mountains, and next to the Shenandoah river. The colors are amazing. The river is represented with blues and greens. The mountains in the middle with a variety of greens, and the blue sky above the mountains. Just like John Denver’s song, West Virginia. “Blue ridge mountains, West Virginia…”
- Inspiration: Lyra loves to paint, and when she heard she was asked to paint where she lived, we quickly got out our supplies!
- What I wish people understood about Prader-Willi syndrome: Lyra pays a lot of attention to the beauty of this world. She sees the beauty of it. She’s not bogged down with a lot of stress that some kids her age are. She’s in her own world, and we believe PWS makes her a kinder and sweeter person.
- What I want people to know about me: I love my family! Especially my Poppop!
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Artist
Patricia Hütter, 38, Austria, 5 pieces
I use paper and felt tip pens or fine liners to make my drawings.
- Inspiration: I used to colour out mandalas but at one point this was no longer enough. I wanted to let my inspiration run free. Through my love for colours and forms in my drawings I developed a room in which I feel I can express myself. The sense of drawing feels like home to me. Instead of taking a step outside my home, I invite other people to join me in my home.
- What I wish people understood about Prader-Willi syndrome: We always have to be very careful with what we eat and need help managing our diet.
- What I want people to know about me: I’m happy.
Artist
Ansh Metharamani, 20, India, 5 pieces
I have drawn a picture of my city Kolkata in India. The unique thing about my city is electric trams, black and yellow iconic taxis and the famous Howrah bridge. I have used oil pastels (crayons) to colour the picture. The famous festivals celebrated in my city Kolkata are Goddesses Durga and Kali, they are powerful and stood to destroy evil.
- Inspiration: I love to draw and it’s my passion to create whatever I see on my drawing sheets. I love vibrant colors in my drawings. I love to draw pictures of cities and Indian Gods and Goddesses.
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Artist
Khaled, 4 ½, Nebraska, 1 piece
If people in your art, who are they?): My mom asked me to draw something that represents Egypt, her hometown. I used different color crayons.
- Inspiration: I wanted to express Egypt hopefully one day I can visit with my parents
- What I wish people understood about Prader-Willi syndrome: That is in not the end of the world really!
Artist
Ann, 21, Mass., 1 piece
Acrylic painting. So messy!
- Inspiration: I love flowers. Except when the ants get to them.
- What I wish people understood about Prader-Willi syndrome: We can do anything.
- What I want people to know about me: I love learning and reading about western civilization.
Artist
Chloe, 19, Mass. 1 piece
I used rope and shells from the beach and put them in the sand to make my sculpture.
- Inspiration: Cape Cod has a lot of beaches and I love going with my staff.
- What I wish people understood about Prader-Willi syndrome: PWS is very rare.
- What I want people to know about me: I am really smart and know a lot about a lot of things.
Artist
Anilton, 20, Mass., 1 piece
I made the soap in voc.
- Inspiration: My voc. teacher.
- What I wish people understood about Prader-Willi syndrome: PWS is hard.
- What I want people to know about me: I am an athlete.
Artist
Emile, 21, Mass., 1 piece
I put my favorite shells in sand to make a heart.
- Inspiration: Because I love hearts and love Latham.
- What I wish people understood about Prader-Willi syndrome: I don’t know.
- What I want people to know about me: I love swimming.
Artist
Emma, 16, Mass., 1 piece
Staff helped me twist the pipe cleaners into a bug with beads.
- Inspiration: I love purple!
- What I wish people understood about Prader-Willi syndrome: Oh come on.
- What I want people to know about me: I like when my family sends me mail.
Artist
Jess, 21, Mass., 1 piece
I used clay in a mold then took it out and it broke a little I still painted it. The heart is okay though.
- Inspiration: I liked the colors and love making crafts.
- What I wish people understood about Prader-Willi syndrome: Sometimes things are difficult for me.
- What I want people to know about me: I love my friends.
Artist
Kai, 20, Mass., 1 piece
I painted flowers on a canvas. I used paint and my favorite colors.
- Inspiration: I like to paint and whenever I can do a craft it makes me happy and calm.
- What I wish people understood about Prader-Willi syndrome: I guess please don’t change my schedule.
- What I want people to know about me: I love horses and I always do my exercise.
Artist
Sequioa, 21, Mass., 1 piece
I used glitter pipe cleaners and my staff helped with the hot glue gun to put everything on a shell.
- Inspiration: I love shells and anything with sparkles.
- What I wish people understood about Prader-Willi syndrome: We are really good readers.
- What I want people to know about me: I love styling my hair.
Artist
Sequioa and Ben, Mass., 1 piece
We dug a mote at the beach with our hands and let the water fill in. Then we collected sticks and my staff helped us spell out Latham.
- Inspiration: Me and my friends love Latham and we are surrounded by water all the time on Cape Cod.
- What I wish people understood about Prader-Willi syndrome: We are creative and have lots of love for everything good.
- What I want people to know about me: We are all nice people.
Artist
Ashley, 16, Mass., 1 piece
First you take the blank canvas and picture what you want to see. Then you ask Brittni to hot glue the stuff on. I used sand, beach grass, shells, rope, and a whale.
- Inspiration: Brittni said that I should make a craft about Cape Cod so I did.
- What I wish people understood about Prader-Willi syndrome: Everything will be okay.
- What I want people to know about me: Sometimes I like to act.
Artist
Rachael, 18, Mass., 1 piece
I glued everything on the canvas to make it look like a beach. I love going to the beach.
- Inspiration: Cape Cod
- What I wish people understood about Prader-Willi syndrome: We are just like you.
- What I want people to know about me: I love fashion and my earing collection.
Artist
Joselyn, 21, Maryland, 1 piece
Brittni helped me with the glue gun to get all the grass and netting glued safely. It looks like a cape cod Latham beach.
- Inspiration: My dog and my staff.
- What I wish people understood about Prader-Willi syndrome: Sometimes I get frustrated but my staff always help me.
- What I want people to know about me: I love to clean and I am a nice person.
Artist
Maya Servais, 20, Minn., 1 piece
I created it by taking pictures and made it into a collage. The materials I use to make my collage is a poster board, tape, photos and letter stickers.
- Inspiration: What inspired me to create my artwork is the city I live in Stillwater and lake Elmo Area.
- What I wish people understood about Prader-Willi syndrome: The one thing I wish people to knew about Prader Willi Syndrome is the compulsive behavior such as picking at the skin and being hungry all of the time.
- What I want people to know about me: The one thing I wish people knew about me is I like dancing with my friends and I love animals.
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Artist
Lenny Shang, 11, TX, 5 pieces
This is a picture created with marker pens.
This artwork is a heartfelt birthday gift from Lenny to his mother. The vibrant piece depicts a powerful dragon and a determined warrior, symbolizing the deep connection between mother and son. The dragon represents Lenny, born in the Year of the Dragon, while the warrior stands for his mother, showcasing their mutual reliance and unwavering support for one another. The bold colors and dynamic composition reflect the strength and love in their relationship…
- Inspiration: Lenny was born in China and was diagnosed with PWS at the age of five. He and his mother spent seven difficult years in China and immigrated to the United States at the age of seven.
- What I wish people understood about Prader-Willi syndrome: I hope that more and more people around the world can pay attention to PWS. I also hope that more people can know more about PWS.
- What I want people to know about me: My genes are missing, but my soul is complete. I want to be a famous artist!
Artist
Alexandre Ciríaco
A Pintura diamante consiste em colocar as pequenas pedras uma a uma, com auxilio de uma caneta especifica e seguindo o esquema das cores e simbolos que a peça já trás
- Inspiration: Foi na altura do Covid, o meu filho não tinha nada que fazer e encontrámos esta actividade que ele adora
- What I wish people understood about Prader-Willi syndrome: A síndrome de Prader-Willi é uma condição complexa e multifacetada que merece maior visibilidade e compreensão. Embora seja menos conhecida que outras síndromes, ela afeta significativamente a vida de muitas pessoas e suas famílias.
- What I want people to know about me:Gostaria que soubessem que a Prader Willi é mais do que apenas obesidade: A obesidade é um dos sintomas mais visíveis da síndrome de Prader-Willi, mas cada pessoa é única. O apoio familiar é essencial. A pesquisa contínua é crucial para o desenvolvimento de novos tratamentos e terapias mais eficazes. Aumentar o conhecimento sobre a síndrome de Prader-Willi é fundamental para melhorar a qualidade de vida das pessoas afetadas.
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Artist
Anjani Goel, 12.5, India, 3 pieces
I am submitting drawing of Shri krishna. I created this mandala art with the help of my art teacher . She drew circles for me then I used my imagination to draw different patterns. I like anything colorful so used many colors.
- Inspiration: A design on my t shirt.
- What I wish people understood about Prader-Willi syndrome: We need to be dealt with patience.
- What I want people to know about me:I also want to make friends.
Artist
Ahmed Hosam, 16, Egypt, 1 piece
My art is my story with pws. I use paper and coloring pencils.
- Inspiration: My mother helped me and inspired me to turn my story into a work of art that I share with my friends to support them.
- What I wish people understood about Prader-Willi syndrome: Life with PWS is not easy, but it is full of wonderful challenges. With PWS, your life changes for the better.
- What I want people to know about me: I am handsome, wonderful, and funny. I love all people, but I ask them to help me so that I can face all these challenges every day.
Artist
Ayah Hassanein, 16, Egypt, 1 piece
I love walking in our neighborhood with my parents and siblings. I love dogs. I colored for my 1st time inside this beautiful picture of a dog holding a balloon and walking in the park on a beautiful sunny day.
- Inspiration: My mother.
- What I wish people understood about Prader-Willi syndrome: Healthy diet and not offering me candy.
- What I want people to know about me: I am a loving, trustworthy and caring person.
Artist
Ryan Casey, 20, CA, 1 piece
Southern California Dreamin’, Acrylic Paint on Canvas
- Inspiration: This pieces is inspired by Ryan’s local area. Southern California is great because we have so much close to us, and this painting includes a few – mountains, including snow for skiing, the pacific ocean, poppy fields (our state flower), sunny weather, and of course Disneyland!
- What I wish people understood about Prader-Willi syndrome: I wish people knew how important growth hormone is; I want more people educated about it.
- What I want people to know about me: That I’m nice and kind, and fun to be with.
Artist
Freya Smyth, 13, 1 piece
The artwork that I shared is a poem about a redwood outside of my window. How I created it was I wrote a poem and then I drew a redwood outside of it and then I shaded the background with yellow. The materials that I used were a pencil, a green and a brown color pencil, and a yellow pastel.
- Inspiration: I live near the redwood forest. The trees make me feel close to home.
- What I wish people understood about Prader-Willi syndrome: That a little tiny part of the 15th chromosome is gone.
- What I want people to know about me: That I have something called Prader-Willi syndrome and I am on the basketball team. I am in 7th grade, I have five dogs, I love horses, am really good at puzzles, and I am good at swimming.
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.