Rare Aware Art Share Gallery 2024
We are excited to share the artwork submitted for PWSA | USA’s brand new initiative – The 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 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 future Rare Aware Art Share submission opportunities, please click HERE.
Rare Aware Art Share Print-on-Demand
The intention of the Rare Aware Art Share is to spread the vision and voice of those living with Prader-Willi syndrome. We have created a way for you to proudly wear and display art created by our participating artists living with Prader-Willi syndrome. Printify is our print-on-demand (POD) platform that allows you to choose from a wide range of products. As we put out the call for our 2024 themes, our catalogue of art will continue to grow as well.
Reasons to POD
- It allows you to spread awareness about Prader-Willi syndrome. (When asked where you found such an interesting piece of art, you will have the opportunity to speak about the artist and PWS.)
- It gives you a chance to show your loved one and community some of the many beautiful creations people with PWS can make.
- It boosts your loved one’s confidence by sporting their art on a product of your choosing.
- It allows you to create and keep a memento of an art piece you love.
How it works
- Visit the Rare Aware Art Share pop-up shop on Printify at https://rare-aware-art-share.
printify.me/products - Browse the collection of already designed products and purchase one if you like it.
- If you don’t see something you like, browse the catalogue of products that Printify offers. Be sure to get the product number, size, and color.
- Decide which art piece you would like to print on this product.
- Email communications@pwsausa.org. Include your name, email, phone number, the information about the product and which art piece you would like to print on this product. If possible, please share pictures and screenshots with us.
- We will create the product of your choice, upload it to the store, and then notify you when it is available for purchase. All of the customer service needs regarding the product, once it is created and ordered, will go through Printify.
*Please note that the prices set are simply for manufacturing and shipping the product. There is no profit being made by the artist or PWSA | USA.
We hope you enjoy and see the value in this aspect of the Rare Aware Art Share. Not only is it a chance to support art that you enjoy, but it can also be a unique and lighthearted way to start those conversations that spread awareness and education on PWS to your community.
What is your superpower?
What are you capable of?
Artist
Kaitlyn Disney
I used cutouts and glued my picture together on colored paper to make a hot air balloon. I wrote the word “spring” in my picture since spring is coming.
- Inspiration: I was bored and my 1:1 gave me the artwork to create. I enjoyed doing it.
- What I wish people understood about Prader-Willi syndrome: That when people don’t understand my syndrome, it’s stressful. I’m hungry all the time and people shouldn’t give me food when I ask for It.
- What I want people to know about me: I’m a very loving person, I like to help others and make them smile.
Artist
William Thomas
This is an acrylic painting on canvas.
- Inspiration: I love the ocean, sunsets, and waves.
- What I wish people understood about Prader-Willi syndrome: Your brain doesn’t tell you when to stop eating.
- What I want people to know about me: I like to run, swim, fish, and paint. I love to give my paintings to other people to make them happy.
Artist
Kinsley Reasor
I made a frog with sparkly paint and water. I used paintbrushes. It was sprayed in the oven to make it shiny. I made it at Olympics.
- Inspiration: I wanted to make it into a rainbow. It inspired me because I like rainbows so much.
- What I wish people understood about Prader-Willi syndrome: Popcorn can make me choke. Sometimes I have candy like at Halloween. I can do different things than other people like puzzles and games. I bite my nails and scratch, which makes me bleed. I love unicorns and rainbows. I can’t eat a lot of stuff because it make my tummy hurt.
- What I want people to know about me: I play puzzles and games. I have movie nights and snuggle. I play Olympics bocce ball, basketball, cheer, art and corn hole. And it’s so fun when I can play with friends. That’s what I like about Olympics.
Artist
Sherrie Harris
Sherrie enjoyed working with her staff on this project. She drew her favorite thing… flowers and smiles. She also made a stuffed bunny. “I love bunnies.”
- Inspiration: My favorite things, flowers and smiles.
- What I wish people understood about Prader-Willi syndrome: Sherrie had a difficult time answering this question.
- What I want people to know about me: I’m funny and I love my boyfriend Kyle.
Artist
Heather Taylor
MeMe, Heather’s instructor, asked her what she was interested in creating on that day and Heather stated she wanted to draw. MeMe suggested a Dragonfly. She printed out some reference photos and Heather created her piece with watercolor.
- Inspiration: MeMe… She gives me a lot of ideas.
- What I wish people understood about Prader-Willi syndrome: Heather wasn’t able to elaborate much on this question.
- What I want people to know about me: That I love my boyfriend. Me and Stephen.
Artist
Harmony Plum
I enjoy crocheting. My mom taught me how to crochet. I love to make blankets, hats, scarves and many other things. Especially gifts for others. I have also submitted my jewelry I made in my classes at ArtWorks along with the hats I made. I use YouTube a lot for lessons on crocheting and what materials I would need for a project. I used yarn for knitting and we used stones, wire and other mediums. I love making jewelry and selling it in the gallery. I have sold a few pieces already. I also paint. I love to do all kinds of art and learn from my amazing teachers. We researched on how to make candles and along side my staff I enjoyed creating candles. We melted wax, and added drops of liquid to make them smell good and used dried flowers inside the wax for decoration. Mixed media is my favorite but all around I just love to do art.
- Inspiration: My inspirations just pop up. I get a lot help for ideas from my teachers. They are great with helping and utilize reference photos for my paintings. Sometimes the ideas just come to me.
- What I wish people understood about Prader-Willi syndrome: I would like people to know that it is an interesting thing to learn about but very hard to diagnose. Just make sure your friends, family and staff are aware of your diets so you remain healthy.
- What I want people to know about me: I am a very fun and nice, caring type of a person.
Artist
Nathaniel Tobler
I used a picture of me and my dog, Harley, as a reference. I used pastels and pastel pencils on art board. Harley died in 2021 and I miss him greatly.
- Inspiration: I chose to draw this picture because I love Harley so much and really miss him. I love all dogs and it seems like all dogs love me.
- What I wish people understood about Prader-Willi syndrome: PWS is not who I am–it’s just a challenge I get to deal with.
- What I want people to know about me: I am not Prader-Willi Syndrome, even though I have it. I want to hang out with friends and have a good time.
Artist
Lauren Esparza
This was done for her art class. Her teacher encouraged her to try art at her own pace. This is her dog, Raven Rose.
- Inspiration: Her teacher and her love for her dog.
- What I wish people understood about Prader-Willi syndrome: Hand-eye coordination is so hard that coloring in lines is often impossible and all the years of humiliation and teasing makes most challenges worse. Kind words and support make all the difference in their self-esteem and willingness to try.
- What I want people to know about me: I am her never-ending cheer leader. Some days are hard but she doesn’t give up and neither will I. I am proud of every day she starts new. The heartache, dr.’s, challenges, medicine, often hurtful remarks and lack of understanding- yet she smiles. She amazes me each day.
Artist
Nilo Mohadjer
I used watercolors to create the ocean sunset. I used colored pencils and markers for the sea turtles and landscape. For the paint pours, I used acrylic paints.
- Inspiration: I am creative and love all the bright colors. It makes me feel good to make art for people.
- What I wish people understood about Prader-Willi syndrome: I love to do art and enjoy making many different types of art. To see more of my art, please go to my art blog: artofnilo.wordpress.com
Artist
Victor Penta
My superpower is: I get to go use my voice at the U.S. Capitol to speak to the U.S. Senators and Representatives about how we struggle with PWS and how they can help us find a better study drug to help us for a better life.
- Inspiration: I am on the PWS Adult Advisory Board and I want to speak for others with PWS. Going to speak in D.C. at Capitol Hill will help the politicians understand our struggles and hopefully get them to help us.
- What I wish people understood about Prader-Willi syndrome: That some of us can do things independently, but some can’t. We are all different and that is ok.
- What I want people to know about me: I am a very kind person and I like to help others.
Artist
Miley Garibay
Miley loves to color and cut different sizes of paper and just make art!
- Inspiration: Valentine’s Day
- What I wish people understood about Prader-Willi syndrome: That they are super creative and their creativity means something to them.
- What I want people to know about me: I love everything and everyone.
Artist
Freya Smyth
I used different beautiful colors of yarn to knit purl the scarf. I included my dogs and my cat.
- Inspiration: It is fun to teach others how to knit and purl. My friends inspired me to knit. Also it’s fun to knit and purl with my friends.
- What I wish people understood about Prader-Willi syndrome: I have Prader-Willi syndrome. I take shots every night.
- What I want people to know about me: I am on the basketball team. Something that feels good is riding horses and hiking in the redwoods.
Artist
Kyle Gallagher
I submitted 2 works at this time. The first is my Poison Dart Frogs and the second is a Flamingo. I find that art calms me and helps with my mood. I enjoy creating beautiful art pieces and I especially love animals. Animals are my go to subject. Amphibians and reptiles are among my favorite things to paint. The Poisonous Dart Frogs is amongst my favorite pieces. I really took my time with this and it sold within minutes of being posted online. I am especially proud of that piece for it went to a very special friend of mine.
- Inspiration: I’m inspired by a lot of things but most of the time an idea pops in my head and I just draw it. I get an idea, research it for reference, then sketch it out deciding what medium I will use. I work primarily with acrylics but I will explore just about anything. I have recently started making jewelry with my teachers at ArtWorks and I love it!!
- What I wish people understood about Prader-Willi syndrome: This is a hard one. I want people to know that people with PWS can enjoy a special treat with moderation.
- What I want people to know about me: 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…
Artist
Aiden Brown
Paint. Wood.. We need some color in the world.
- Inspiration: Making things colorful
- What I wish people understood about Prader-Willi syndrome: We are misunderstood
- What I want people to know about me: I’m a good guy
Artist
Monique Smartt
I wet paint a Viola.
- Inspiration: My teacher
- What I wish people understood about Prader-Willi syndrome: How hard it is to not think about food.
- What I want people to know about me: I am smart and beautiful
Artist
Clay Hessler
Clay’s Super Power is drawing. He demonstrated a great pencil grip from an early age. He enjoys color and especially drawing Pirates, a subject that he has learned quite a bit about. He is careful to add the exact details needed to distinguish one pirate (say Blackbeard) from another (say Captain Jack Sparrow).
- Inspiration: Clay took to drawing and coloring on his own, but he also likes drawing with his grandfather (“Poppop”) who is an oil painter.
- What I wish people understood about Prader-Willi syndrome: A father of a PW child told me this, “They are delayed in many areas but they get there eventually.
Artist
Oaklyn Argo
Oaklyn painted used Symmetry in Art to create a butterfly (the PWSA symbol) using acrylic paint (medium) on watercolor paper.
Inspiration: She used the colors of her choice which represent her free spirit and expresses the vibrant way she sees life. Her favorite part was seeing how her butterfly emerged, which is what we are blessed to witness in her eyes, every single day.
What I wish people understood about Prader-Willi syndrome: I wish people knew how much having a child with PWS has shown us: What it truly looks like to live in a world of inclusion and kindness, that with research and treatment, it has drastically improved life for so so many, and that our child is a gift, who has limitless love and shines hope in the darkness.
What I want people to know about me: Oaklyn is a sweet, artistic, adventurous child who is expressive and absolutely hilarious. She gives hugs to all who will let her and loves to makes others feel important. We are so thankful for the opportunity to see light through her eyes and thankful for all who give back to this little one.
Artist
Ahmed Hosam
A picture of a fish seller. I loved him very much. He is a kind and simple man. I used my mobile phone, and my father helped me.
- Inspiration: I love photography, because I will preserve these special moments
- What I wish people understood about Prader-Willi syndrome: I hope they know I’m very hungry
- What I want people to know about me: I hope they know that I have lost a lot of weight, and that I exercise in the gym
Artist
Lauren Esparza
Self portrait – She has loved Sesame Street since before she could speak. The unique muppets and personalities are loved and feel like a part of her. Her favorites are Julia and Elmo. Her first word was not Mama, Dada or hi/ bye. At 4 it was ” Oscar.” She still does not like Green and believes Oscar is mean.
Lauren and her dog Raven are surrounded by drawings that make up the loved personalities of her life.
- Inspiration: Her art teacher asked her for a self portrait. Thankful to Mrs. Knott.
- What I wish people understood about Prader-Willi syndrome: We have little control over our reaction to food and change. Please give us a safe place to process when triggered by these.
- What I want people to know about me: I love others and enjoy friends. Please understand I can not run, jump and I would love to play if my muscle tone was not so weak. Can we take a walk or play a board game please?
Artist
Lyra Mills
My mommy traced my hands on canvas, then I painted with water color.
- Inspiration: Everyone tells me I give the best hugs.
- What I wish people understood about Prader-Willi syndrome: I have so much love to give.
- What I want people to know about me: I love to play and dance.
Artist
Avery Ball
I was in the Mexican Island Cabo San Lucas for a vacation. I was walking to the beach and I saw this interesting cactus and decided get out my camera and take a cool close up. Just my camera. LOL.
- Inspiration: I was inspired by Ansel Adams cactus photo. I think Cacti are really cool plants. I always wanted to take a photo of one. Cacti make me feel serene.
- What I wish people understood about Prader-Willi syndrome: People with Prader-Willi Syndrome are known to be really flexible. Even though food is hard for us we still can have the option of cooking with supervision.
- What I want people to know about me: That I am ambidextrous. That I am non-binary and my pronouns are they/them. That I love to Horseback ride. I am creative. I go to College for Art.
Artist
Roxanne Peterson
I wrote a special song about who I am, share my superpowers, and show you what I’m capable of. I created it with my heart, soul, imagination, and my powers. I used a computer, Microsoft word, fancy formatting, and lyrics. The people in my artwork is everyone that doesn’t understand us, people without PWS, magic, other fairies, and other legendary creatures. I’m a full blooded fairy with water magic, animal magic, and more. I’m also a ghost queen that is half alive after I had a late blood transfusion when I was a junior due to an unknown bleeding disorder. I love to help others and seek help from people. I am able to build up muscle tone and get stronger through cheerleading, dance, and other exercise.
- Inspiration: My inspiration for my song comes from my mom’s idea to have my wisdom published and the ideas from my peers to write my history and life in a book. I just started to do song writing and always wanted to fit in with others and get accepted and belong with the ordinary besides the PWS community, other fairies, and other creatures.
- What I wish people understood about Prader-Willi syndrome: I wish people knew that not every PWS individual will qualify for just any PWS clinical trials. I have PWS, but I don’t qualify for a lot of the trials. Also, we can build up muscle mass and get stronger with the proper training and can feel full. Pescatarian or vegetarian diets are best for PWS.
- What I want people to know about me: I wish people knew that I wanted to understand who I am, my purpose here on earth in this realm, and discover myself to find out really who I am. I’m a full fairy and half alive humanity as a ghost queen. I’m grateful and proud of who I am and waiting to earn my ultimate package that has more powers and my transparent sheen.
Artist
John
My video is awesome and I want to share it to spread happiness.
- Inspiration: My superpower is being able to connect to my surroundings and beings within it. I enjoy making new friends because it is awesome.
- What I wish people understood about Prader-Willi syndrome: Living with PWS is more bougie than bad. I love listening to songs by the Migos.
- What I want people to know about me: Empathy, kindness, and understanding can bridge gaps and create a more compassionate world.
Artist
Khaled Ouedraogo
Karaoke machine and singing happy birthday
- Inspiration: Music and singing
- What I wish people understood about Prader-Willi syndrome: That it is just a condition and doesn’t define the individual. So many updated facts are still unknown to providers and community
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.