Steve and Hope Dezember had been dating for only four months when Steve was diagnosed with amyotrophic lateral sclerosis (ALS), the neurodegenerative disorder also known as Lou Gehrig’s disease. Two days after his diagnosis Steve proposed and the couple were married two months later, knowing full well that the road ahead would be fraught with unthinkable challenges. Their story of unconditional love inspired musician Michael Franti, along with his longtime partner Sara Agah, to create the Do It For The Love Foundation.
The Dezembers got to know Franti at Florida’s Wanee Music Festival in April of 2013 after Hope began pushing out messages on Twitter asking for musicians to meet her husband. After her third tweet, Franti responded and spent time talking with the couple backstage before the show. He then invited them to watch the performance from the side of the stage. During his concert Franti brought the pair on-stage and told their story to an audience of 20,000, a moment that Hope said she will never forget. As the musician began to play “Life is Better With You,” Hope picked Steve up out of his wheelchair and began to dance with him in front of the crowd.
Franti has long been known for focusing on social justice issues, both in his music and rhetoric. After the experience on stage with Steve and Hope, Franti and Agah decided to formalize a foundation with a specific mission.
The nonprofit has structured itself as a wish-granting organization that works with people in advanced stages of life-threatening illnesses, children with severe challenges and wounded veterans to bring them to live concerts, according to Lisa Rueff, the executive director of the organization.
“I’ve always believed in the healing power of music,” Franti said this past week in an interview before a performance at Belly Up.
For Agah, who is an emergency room nurse in Saskatoon, Canada, the foundation fits in with her broader view of how to provide medical care.
“You can nurse two ways: You can really be in touch with the human experience, and then you can just go and do your job,” she said.
Agah further shared that at the end of the days when they are apart, she and Franti use Skype to stay in touch, and one of the questions they always ask each other is “what did you do (today) to make someone feel significant?”
The pair believes that the foundation achieves that goal by focusing on the individuality of each person, as opposed to associating the person solely with their illness.
“The individual is not their disease or their illness or their disability. They are a human being, they are living until their very last breath,” said Agah.
In addition to focusing on the individual, the foundation also works to recognize the caregivers and family members, as well as to raise awareness of the specific illness, explained Agah.
“And then you see them smile and they all laugh together and they all dance, and they are moved and changed not only by the music — they create memories that last even beyond the lifetime of the person who’s there at the show,” Franti said.
On a music cruise in February, Franti and Agah met Jenny Van der Linden, a Coloradan who is now in the final stages of life after battling ovarian cancer. For the past two years a documentary film crew has been following Van der Linden and capturing her story. Although she wasn’t an official client of the foundation, Van der Linden and the crew asked Franti if he would be a part of the film, and he readily agreed. On Wednesday night Franti sat down in Aspen with the filmmakers and Van der Linden’s daughter, Jessie, as Jenny in her final days was too weak to make the drive from her home in Boulder. At the end of the interview Franti and Agah sent a message of good-will to Jenny recorded by her daughter using her iPhone.
Anyone who has ever watched the 6-foot, 6-inch Franti perform in concert or interact with fans would be surprised to know that his current foundation work didn’t always come naturally.
“I was afraid to talk to people who looked like they were sick or dying,” said Franti.
After meeting and spending time with Steve Dezember, Franti began to shift from feeling sorry for someone in a wheelchair to wondering who they are as a person. The singer also believes that it’s important for society to be open and talk about illness and disabilities.
For example, when he first met Van Der Linden, Franti said in a friendly manner: “You look like you’re sick, what’s wrong with you?”
Franti attributes much of his approach to life with his childhood and upbringing. He was adopted by a Finnish-American couple, and as a child he never quite felt like he fit in, according to Franti. However, his mother was insistent that all her children, both biological and adopted, had the same opportunities. Nevertheless, Franti referred to himself as a shy, awkward kid who had a hard time making friends.
It wasn’t until Franti got a job as doorman at a nightclub, where every night he was forced to greet hoards of strangers, did he begin to get over his introverted personality. On his first night on the job, Franti’s mentor at the club told him to “always use discretion.” The activist singer took this lesson and has applied it throughout his life, breaking the mold when and where he sees fit.
The Do It For The Love Foundation officially came into existence last August, with the initial fundraising party being held here in Aspen and sponsored by Michael Goldberg, the owner of Belly Up. Since then close to 100 wishes have been granted, with Franti performing the majority, although not all, of the wish requests. Other artists who have contributed include George Strait, Jack Johnson, Pink, Miley Cyrus and David Benoit, according to Rueff.
“We want people to know we are there for any fan who wants to see any band,” said Franti, who goes on to quip that it doesn’t matter if the wish includes bluegrass music, the opera, or the band Metallica.
While Franti has a love of the mountains, and laughingly says that he has sometimes experienced all four seasons in a single day in Aspen, he acknowledges that the town is incredibly generous and philanthropic.
As an example, Franti pointed out that Goldberg recently used his music industry connections to facilitate a wish grant for someone to see the band Linkin Park.
For his part, Goldberg said that he is just connecting the dots and that it’s easy to make a phone call.
“Some people ask you to do something, you know they are special,” said Goldberg, as he described Franti and his “infectious nature.”
The Aspen community came out in droves on Thursday to support the Do It For The Love Foundation for two fundraising events. The first was held at the Doerr-Hosier center and sponsored by the Aspen Yoga Society, while later in the evening Franti performed an intimate concert at Justice Snow’s.
During the first event yoga teachers from throughout the Roaring Fork Valley taught a large group yoga session as Franti played music in the background. The event was organized by Aspen Yoga Society founder Gina Murdock, who also developed a relationship with Franti via Twitter.
In addition to bringing the community together, the event sponsored several local individuals who fit the criteria of Franti’s foundation.
“Part of the event is to honor their journey,” said Murdock.
One of those individuals who took part was Aspenite Max Grange, 27, who has been confined to a wheelchair virtually his whole life and suffers from spastic quadriplegia. Although he is unable to talk, Grange can communicate by typing, using his eyes in conjunction with special computer equipment.
“Helped my body feel good. Music makes me happy. Fun with people,” Grange said in an email the day after the event.
As he wrapped up the final fundraising event at Justice Snows, Franti drew an analogy between working on large-scale social justice issues and using a watergun to put out the flames of the whole earth, as opposed to squirting the flowers in his own backyard and focusing on smaller challenges. Franti said he has decided that he wants to do both.
In the end it may be those individuals who benefit from his foundation that are able to best articulate the impact that Franti has on the world. Speaking on behalf of Steve Dezember, who was in an Atlanta hospital earlier this week receiving a blood transfusion, Hope described the moment when they talked to Franti and saw him in concert.
“It makes you feel special, it makes you forget you are sick for a little while,” she said.