2018 Awards Collection

POWERED BY THE EVERYLIFE FOUNDATION

FEBRUARY 27, 2019

RAYBURN HOUSE OFFICE BUILDING WASHINGTON, DC RAREARTIST.ORG #RAREDC2019 #RAREARTIST

A PROGRAM OF THE EVERYLIFE FOUNDATION

The Rare Artist Contest was established in 2010 to exhibit the unique gifts of individuals affected by rare diseases and to promote the expression of their stories through art. All Rare Artist Awardees are presented gift cards and invited to speak during Rare Disease Week on Capitol Hill. Additionally, their artwork is showcased throughout the year at various patient and biopharmaceutical conferences.

Our intention is to showcase the artwork and the artist. It is our hope that the works and personal stories celebrated by the Rare Artist program will help raise awareness about rare diseases and the rare disease community.

Mission RareArtist.org is an online gallery dedicated to artists affected by a rare disease. RareArtist.org creates a permanent, free, virtual space where “rare artists” can express themselves and submit their work for public viewing.

Join the Movement At RareArtist.org you can view exceptional works from artists of all ages. We welcome anyone whose life is touched by a rare disease– you, a family member, someone you care for – to upload your own art and share your story. We encourage the rare disease community to continue to contribute their work to this site and grow its collection.

To become a Rare Artist sponsor, contact Carol Kennedy at ckennedy@everylifefoundation.org

Featured Artist Ejaz Khan

Ejaz Khan was born in Bombay, India. His Mother was a makeup artist and his father was a director in the film industry. A lot of his time was spent on film sets during his younger days, where his love of photography was born. There he learned the power of storytelling, drama, and gained an appreciation for cinematic flair. These values stayed with him in his teenage years as his interests blossomed further into the realm of fashion. Seeking adventure and a new beginning, Ejaz left India for New York to combine his passions and become a fashion photographer. He shoots for fashion magazines such as Vogue, Twill, Noise, and others to name a few.

Ejaz is expanding his photographic repertoire to the natural world. He borrows from the narrative techniques of the film/fashion storytelling and transposes them onto his animal subjects.

He travels all over the globe to create some stunning imagery. A keen eye for motion allows him to break apart the seemingly untameable patterns of animal movement and capture striking moments that encapsulate the energy and magic of their behavior.

For more information, contact Ejaz Khan: ejazkhanearth.com ejaz@ejazkhanearth.com

/ejazkhanearth (917) 776-6009

2018 Artists The Awards Collection

Nell Ystebo, 9 Lion Children - Sue Colton Memorial Merit Award I drew this lion in my drawing class with chalk, but I didn’t like the sound that the chalk made on the paper. The lion is very strong and young and is laying in the grass.

I drew the mouth and nose making an upside-down heart. I have not drawn a lion before and I never drawn with chalk. I love animals and hope someday I can see a lion in real life.

Jaxson Anderson Ghost Children - Community Leadership Judges Panel Jaxson used ink and paint on a black canvas.

Jaxson included a ghost in the picture to represent something there that sometimes people don’t see, just like sometimes people cannot see his illness.

Harlie Morgan, 6 The Ocean Awaits Children - Popular Vote Harlie suffers from a mutation on her GNAO1 gene and is one of less than 50 cases diagnosed worldwide. She is completely non-verbal and has severe intellectual and developmental delays. That doesn’t stop her from painting, something 7-year-old Harlie really enjoys. She has painted over 25 pieces, each one with her unique style; no paint brushes necessary! Sometimes when life gets stressful, it’s fun to dream about the ocean.

Josie Hasan The Trumps Teen - Community Leadership Judges Panel I was first diagnosed with M.E at just 9 years old, after feeling poorly 12 months prior to this. I became completely disabled and unable to care for myself for many years. I always used art as therapy, even back then I would draw cartoons whilst laid up in bed too unwell to play with other children. Fast forward 20+ years and unfortunately I’m’ still severely affected by this, plus other conditions that have been diagnosed.

After losing touch with my art and drawing, I was too poorly for such a long time to be able to sit and concentrate that I’m happy to say that finally, last year I completed this drawing ‘The Trumps’ it is extremely special to me, it represents my family; myself; my husband and our daughter.

POWERED BY THE EVERYLIFE FOUNDATION

Christina Baltais, 33 Sea of Grief Adult - Community Leadership Judges Panel

Karen Barill, 55

I painted “Sea of Grief” to help bring visibility to those affected by myalgic encephalomyelitis (ME).

Peaceful Feeling

It was directly inspired by my experience living with ME for the past 13 years and speaks on the river of grief that is ever flowing and shared amongst the ME community.

Our sea of grief holds all the lives lost and struggles endured because of this disease.

All of us have had to let go of facets of our lives once held so dear, no matter how hard we fought to preserve them. My most piercing grief is knowing what my life could have been like without ME, and the lack of control I over that.

When grief visits, whether it be a quiet nudge or a roaring wave, I honor it by giving it space.

Over time my grief has changed in shape, but I know it will always be there.

Adult - Popular Vote I have Hidradenitus Suppurativa Hurley Stage III, Affected by this disease since my pre-teens with over 48 surgeries and skin grafts, with my latest surgery August 2018 another skin graft in my groin. My art takes me to a better place.

PEACEFUL FEELING: Recovering from another skin graft my mom was sending encouragement through FaceTime.

Accidentally I screenshot my face and realized my face looked very sad with tears in my eyes. I printed out the photo, redrew my face and shadowed it in with charcoal.

I drew flowers around my face to make a sad situation better. I used colorful water colors for paint and named it “Peaceful Feeling” because that’s how I felt when it was completed.

Jordan Perez, 17 Will You Remember Me? Teen - Popular Vote Jordan loved to draw and spent her free time doing so.

This piece is submitted on behalf of Jordan by her parents who provided the title of the piece.

Chronic illness can leave people alone more often than not. Jordan felt lonely and missed her friends. She missed out on activities and felt she was not included because of being sick. We titled this piece “Will you remember me?” to portray the loneliness chronic illness creates and that Jordan felt.

This piece and title now has a second meaning for us.

Jordan passed away from lack of diagnosis and treatment of her rare disease, primary myelofibrosis. We were told she was not diagnosed because the disease is not expected in children despite the doctors listing their treatment of this condition. We want doctors to remember Jordan and to look for the zebras. Look for the unexpected. Run the tests despite expectations.

Disease knows no age, race, gender. “Will you remember me?” will be our anthem as we push for change in Jordan’s memory – a change in funding, in research, in legislation and in the medical community.

岳珍 余 (Shelly Yu), 17 As Ladybugs Teen - Special Artistic Merit Award I have a sister who has the rare disease-Tuberous Sclerosis Complex (TSC). Her tubers are similar to spots of ladybugs.

The beautiful mutations make her special: Most of the time, she is a storm. She has poor emotion management. She has tumors in several organs of her body. My mom has to take her to the hospital every half a year to track the size of her tumors. My mom puts much efforts to take care of her. She also has seizures which damage her intelligence. Her bad temper has bothered my brother and me for a very long time. I even thought of killing myself because of her.

Sometimes, she’s sweet. She makes me realize there are some things important in my life other than money: Love and patience. However, I got through the bottleneck and have tried to be optimistic. Sometimes, I wished my sister’s disease would get well although it’s not possible.

Stanley Rill, 66 Doing the Deimatic Adult - Special Artistic Merit Award My work reflects on my deep appreciation for the natural world, utilizing mostly found or reclaimed wood. Many times, the shape of the wood, or it’s intended setting suggests what it should be turned into. Other times, the idea starts out with a drawing, then I search for suitablematerials to complete the piece.

I enjoy combining the processes of subtracting and adding materials to achieve the desired effect. It’s a combination of carving and assemblage that provides possibilities that cannot be achieved any other way.

For me, making things is one of life’s most rewarding pursuits. It gives me a sense of purpose that nothing else can, and l am grateful that l have had the opportunity to pursue my joy of creativity throughout my life. I look forward to continuing my creative journey as long as possible.

Michaela Oteri, 28 Cripple Punk Self Portrait Adult - Special Artistic Merit Award Cripple Punk is a movement created by Tyler Trewhella (RIP), specifically by the physically disabled for the physically disabled, about embracing yourself and all of your scars.

This greatly inspired me to start a series of portraits of disabled people.

This is a portrait of myself: a fat, white, disabled woman sitting in her wheelchair with her forearm crutches visible behind her and surgical scars on her knees. I drew this in an Art Nouveau/Mucha inspired style and I accented with princess lilies because they mean a lot to me and are a symbol of the relationship I have with my mother who is also disabled.

My shirt says, “The Future Is Accessible” (a saying coined by Annie Segarra), emphasizing the point that we, as disabled people, deserve a future that welcomes us and doesn’t hold us back. Instead of our limitations being swept under the rug, they should be realized.

Brenda Gagne, 54 House on the Lake Adult - Special Artistic Merit Award I happily stumbled onto painting two and a half years ago at a “Paint the Town” birthday party. I found the feel of the canvas, brushes, and paint to be so exciting that I decided to give it a try. To my amazement, I found a hidden talent!

I’m totally self-taught which is very liberating – there’s no focus on “the correct way” of painting but instead what feels right to me. I paint in acrylics and have expanded my subjects to include pets and humans.

Myasthenia Gravis has made physical work difficult and at times and at times impossible but hasn’t stolen the absolute joy I feel when sitting down to a blank canvas.

“House by the Lake” is an acrylic painting I did for our local Myasthenia Gravis Association annual raffle. It took a lot of experimenting with brushes, paints, and techniques to get the effect I wanted this painting to have.

Belinda Silva, 58 Reflection of my Mother

Adult - Photography, Digital Art: Popular Vote My photo is a tribute to my mother who survived Guillain-Barre Syndrome and was completely paralyzed for weeks. She was a warrior who displayed courage, strength, and perseverance.

Decades later I developed bacterial meningitis and only had a 1% chance to live. Learning to walk again was one of the hardest tasks I’ve ever endured. I’m alive and here today because I am a reflection of my mother!

Melissa Ellen Milton, 58 Flora & Fauna

Adult - Photography, Digital Art Special Artistic Merit Award My rare disease, Dysautonomia, is a neurological disorder which causes faulty instructions to be sent to the body for many “automatic” functions.

It particularly sends incorrect instructions to the circulatory system.

Like many of us with Dysautonomia, my circulatory system no longer supports me correctly. I am now limited in how long I can stand up (5 minutes for me) and in how long I can sit up (2-3 hours). Other than that, I have to lie down to keep my blood pressure from dropping so low I pass out or from spiking so high I’m at risk for stroke. As careful as I am, I still randomly pass out from low blood pressure 3-6 times a week. I am homebound and no longer drive.

I became seriously disabled in 2016. I took up painting in 2017 for something to do during the long hours I am forced to lie down during the day.

Painting soon took on a life of its own and has become a joyful form of self-expression for me. It has also led to me making new friends (other artists) despite being homebound. It has proven to me that; indeed, one door may close on your Life but if you search hard for a positive new door then you’ll likely find it.

Like many who have Dysautonomia, although I am quite limited in standing on land I can stand for hours if chest deep in the low gravity environment of water. I time each day in water, happily exercising my muscles and enjoying a freedom of movement I no longer possess on land.

My physical therapy time spent in water has inspired most of my artwork. Much of it has a

recurring theme of a person, object, or animal weightlessly gliding about.

Some of my art pieces are underwater photographs I have taken in my therapy pool and then later painted upon. This art piece, “Flora & Fauna”, is one of them. My daughter and I sat in the bottom of my therapy pool while I took a photograph of her releasing the silk roses. To me it symbolizes one of those moments when Life requires you to let go of something you love, and you have no choice but to watch it drift away from you. Like the girl in the painting, we have to learn to let go of the roses. Otherwise our hands won’t be free to hold on to the next good things coming our way. For those of us with rare diseases, those roses we have to let go of may be the life we had back when our bodies were healthy.

Alisha Clarke, 62 The Storm on the Horizon

Adult - Photography, Digital Art: Community Leaders Judges Panel Photography has been a lifelong passion. Now, living with a rare form of non-Hodgkin’s Lymphoma, my photography has taken on a special meaning. It gives me an outlet for my own struggles and challenges me to get out in nature and create images that evoke a feeling or sense of the moment.

This image was captured while visiting the Canyonlands of southern Utah. With hours of watching the storm clouds across the canyons, and hundreds of attempts to capture the perfect moment, I arrived at this final shot which was later carefully processed to create the black and white image. I’m inspired by the great masters of nature photography such as Ansel Adams and Edward Weston.

POWERED BY THE EVERYLIFE FOUNDATION

sue colton Merit Award

“Creativity takes Courage” – Henri Matisse In September of 2017, the EveryLife Foundation and Rare Disease community suffered a devastating loss with the passing of our dear friend and loyal colleague, Sue Colton.

Sue was a valued member of the EveryLife Foundation team, serving in various roles over four years and helping to build the Foundation into what it is today. She was dedicated to the Foundation’s mission and the patients we serve. Sue’s energy, humor and unrelenting optimism will forever be missed by her family, our team and the rare disease community.

As Director of Development, Sue cultivated many of EveryLife’s programs.

The Rare Artist program held a special place in her heart, as she had a great appreciation for art and the creative spirit.

The Sue Colton Merit award was established in 2017 in honor of Sue. This award serves as a reminder that self-expression through art brings forth healing and allows our personal stories to endure.

The EveryLife Foundation congratulates Sue Colton Award Recipients Nell Ystebo (2018) and Anna Hursey (2017).

Thank You to Our Generous

2019 Rare Disease Week on Capitol Hill Sponsors

Presidential

Leadership

Ranking

Champion

Co-Sponsors

Grassroots

POWERED BY THE EVERYLIFE FOUNDATION

Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government. RDLA provides free resources for successful grassroots advocacy.

Advocacy Events 

Rare Disease Week on Capitol Hill



In-District Lobby Days



Legislative Conferences



Rare Disease Congressional Caucus Briefings



RareVoice Awards



Monthly Conference Calls/Webinars

Take Action As an advocate for patients with rare diseases you are a very important part of the legislative process.

You can make a difference, since you are the voices your members of Congress want to hear.

For more information on how you can take action visit us online: rareadvocates.org

POWERED BY THE EVERYLIFE FOUNDATION C/O

RARE HUB, 1012 14TH NW, SUITE 500 WASHINGTON, DC 20005 PHONE (202) 697-RARE(7273)

RAREARTIST.ORG #RAREARTIST @RAREARTISTCONTEST

The EveryLife Foundation for Rare Diseases is a 501©3 nonprofit dedicated to the advancement of treatment and diagnostic opportunities for rare disease patients through science-driven public policy.