genetic

A Creative Heart

Like anyone, Jenny Unrein has her ups and downs. “I like to draw and make people happy,” she says, but “I don’t like people staring.”

Jenny is the 27-year-old artist behind JennyLU Designs, an original art business in Topeka, Kansas, that she co-owns with her step-mother, Wendi Unrein.  Born from a desire to help others, the business is doing well, but it’s not easy.

Sure, any business will go through ups and downs, but Jenny is not just any business owner. She has Williams syndrome (WS), a rare genetic disorder related to the absence of several genes in the 7th chromosome. People with WS have developmental delays, health issues, and distinctive facial features, sometimes referred to as “elfin”, thus the frequent staring.

JennyLU Wendi and Jenny

Wendi and Jenny clown around at the JennyLU Designs booth.

Inspiration

“I used to make cards for my mom and for other people to make them feel good,” says Jenny about her life-long love of drawing. Cats and dogs, hearts and flowers are her favorite subjects.

“The thing that caught me was that her drawings were so passionate,” says Wendi, an artist and art teacher. She noted that Jenny rarely draws just to draw: “For her to do art, it has to be for a purpose, for someone else.”

“One day I asked her to draw a picture with a Sharpie, then I colored it in. It was very cute,” says Wendi. That first collaboration grew into a fun activity for them both.

JennyLU program cover

Jenny with the Topeka Easter Seals Capper Foundation program, featuring her original artwork

“One day I was watching Oprah and I saw a girl who had a lemonade stand to help people with cancer, and I wanted to do something to help, too,” says Jenny. So she and Wendi decided to create pictures to donate to fundraiser auctions.

“We took some of the pictures to Jenny’s school and the teachers bought all of them,” Wendi said. “That’s when I realized people would actually pay for Jenny’s pictures.” And JennyLU Designs was born.

That was eight years ago and since then the pair has traveled around the country to conferences and art shows where they sell prints, called “Jennydoodles”, and a variety of other products featuring Jenny’s art, such as note cards, jewelry and calendars. The products are also available on the JennyLU Designs website.

But it’s not always easy for Jenny. She struggles with anxiety, common among people with WS, and it’s often hard to keep her motivated to create new pictures. “Jenny really likes going to the conferences, so when she knows there is one coming up, she stays motivated,” says Wendi.

“We do well at conferences related to disabilities,” says Wendi, giving all the credit to Jenny. One of the most noticeable traits of people with WS is their social, endearing personality. They are very personable, caring, and aware of others’ feelings. “When they see Jenny, they buy,” says Wendi.

And Jenny has become a popular speaker at those conferences, as well, delivering workshops on owning a business and educating others about Williams Syndrome.

JennyLU plaques

Whenever they meet someone with cancer at a show or convention, Jenny and Wendi give that person a Love Life plaque as a show of support.

Art for good

But Jenny has remained true to her original motivation, regularly donating her artwork to a variety of non-profits, both locally and nationally, such as the American Cancer Society. “If I see someone with cancer, I think it’s important to help them. It makes me sad,” says Jenny.

She also creates the cover artwork for the program at the Easter Seals Capper Foundation annual fundraiser in Topeka and donates artwork for the auction. “We donate to a lot of the organizations that help our kids,” says Wendi. In 2015 they also began donating proceeds from card sales to St. Jude Children’s Research Hospital.

People love Jenny’s work so much many have commissioned original works, some from overseas. Her work has also hung in the White House and the Kansas State House.

“My favorite part is seeing people’s reaction to my artwork,” says Jenny. “I love having the business because I’m making a difference.”

Having the business has also made a big difference for Jenny, giving her confidence and purpose. “It doesn’t matter what kind of disability you have,” she says, “you can run a business.”

head and shouldersAbout me: I am Pete Resler, a dad of two boys with special needs. I created this blog to tell stories of exceptional people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.

Pigeon Holes are for Pigeons

Michael Criscione was destined to contribute to society as a vending machine attendant, or at least that’s what a government bureaucrat thought he should do. And maybe for others living with spinal muscular atrophy (SMA) that would be just fine, but Michael is not typical.

“I wanted to do something that makes a difference,” said the 33-year-old when we met in Lafayette, CA, to chat and have a beer.

Allow me to put the scene in perspective: When I said we enjoyed a beer, we did, just in our own ways. I drank mine the usual way, while Michael’s attendant poured his directly into his stomach via a port in his abdomen.

Body breakdown

You see, Michael can’t swallow because the muscles that control that process no longer function properly, much like most of the voluntary muscles in his body, including those that help him breathe. SMA is a genetic disorder that results in muscular deterioration and impaired mobility. Michael has Type 2; Type 1 is the most severe. It is a progressive disorder that cripples more and more over time.

He’s in a wheel chair, his movement is very limited, and he has difficulty speaking clearly. His attendant, Christian, had to interpret much of what he said during our discussion. A BiPAP machine aids his breathing. Despite his physical limitations, Michael lives in his own place, but he does require assistance 24/7.

While his body is greatly affected, his brain and his motivation are fully functional. So when the bureaucrat pressed him to do the vending machine work, it’s understandable why Michael felt insulted.

Michael Criscione

Michael Criscione, flanked by Friends for Benefits Barrel Girls Savannah Gray (left) and Pilar Fox, with friend Kim Masdeo

Making his own way

After finishing high school, Michael studied film at the University of California at Berkeley. During that time he started an indie rock band called the Pied Paupers with some of his attendants who were musicians. Michael was the manager, booking shows and getting them some local radio play.

He took his first job as head of fundraising for a non-profit run by a high school friend. He tapped his music network to begin producing concerts for the charity, but the organization eventually folded.

He took that experience and started Friends for Benefits, a non-profit that helps other non-profits by producing fundraising events primarily in the San Francisco Bay area. “I found that most non-profits are great at whatever their mission is, but most of them have no idea how to fundraise,” he said. “There is definitely a need for what I’m doing.”

Since his first music benefit event under Friends for Benefits in 2012, he has organized more than 10 events, more recently focusing on other different genres that bring in more money for the charities. Michael is the organizer, and others help with the details, such as event operations and finance.

With a fully charged wheelchair and an attendant at his side, Michael is constantly prospecting for future events by meeting entertainers and other celebrities at public events around the Bay area, such as shows, fan conventions, and book signings.

Bigger and better

In January, comedian and character actor David Cross (Tobias Fünke on “Arrested Development”) performed his “Making America Great Again” stand-up show at Davies Symphony Hall in San Francisco. Cross generously donated a portion of the proceeds from the evening to Friends for Benefits.

The next event will be “Call Me Lucky: An Evening with Bobcat Goldthwait” (yes, children of the ’80s, that Bobcat Goldthwait) on May 27, 2016, at the Roxie Theater in San Francisco. It will be a screening of “Call Me Lucky”, a documentary directed by Goldthwait about comedian Barry Crimmins, followed by a Q&A.

“We’re not fully established yet,” said Michael, “but we’re doing bigger and better things.” Several other events are being planned, but his dream is to create a week-long arts festival, with a variety of events benefitting several charities. “I want to get Friends for Benefits to a point where we are doing measurable good and I can be fully independent, with no assistance from the government.”

And how likely would that be if he was looking after vending machines?

About me: I am Pete Resler, a dad of two boys with special needs. I created this blog thead and shoulderso tell stories of incredibly good people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.