The Art and Grace of Battling Multiple Sclerosis

Twenty-five years ago, my aunt Marjorie was diagnosed with multiple sclerosis.

In my extended family, we don't talk often. We don't know about each other's day-to-day. Reunions are few and far between. There is not a lot of drama, and we like to keep conversations comfortable. But the one thing I know for sure: when shit hits the fan, we are here for each other, and we are a witness to each other's lives.

This weekend, I'll be supporting Marjorie and other people diagnosed with MS in the annual "Walk MS" fundraising walk along the Chicago lakefront, where I spent my college years. $$$ PLEASE MAKE A DONATION, if you can. $$$

I am so proud to have my aunt Marj in my life, because despite any superficial interactions we've had over the years, there is a depth of love and appreciation. And a genuine feeling of being there. (Thanks, Marj.)

Over the years, she has endured impaired vision, chronic pain, limited mobility, imbalance, fatigue, physical weakness, broken bones and countless other symptoms, caused by damage to her nervous system. (Not to mention the chemotherapy treatments and experimental medicines.) But she has never displayed a shattered spirit. I am in awe of her optimism, positivity, perspective and humor.

Her story is one of many. And with setbacks come great successes: a loving husband, a beautiful son, a successful career, wonderful friends. 

Back in college, I used to house-sit for aunt Marj, who lives in the Chicago suburbs, while she was out of town. A memory that stands out: she has a magnet on her fridge that says "Never never never give up."

I am reminded of other people like her who have faced illness and never gave up. I know I take my health for granted, and I have to pause to remember that it can all be taken away, with one diagnosis.

In honor of my aunt Marj, who is a writer and singer and mother and sister and wife and general creator and nurturer of awesomeness, I wanted to showcase some creative ways of raising awareness about this life-altering disease.

Oh, and P.S.: Fuck you, multiple sclerosis.

Art by Kirsty Stevens.

Art by Kirsty Stevens.

UK-based artist Kirsty Stevens uses the shapes of harmful lesions that are visible on MRI scans of her brain to etch designs onto glass, paper, wood, fabric and other surfaces. (See more at Vanilla Ink Studios.

Art by Elizabeth Jameson.

Art by Elizabeth Jameson.

Similarly, Elizabeth Jameson uses her MRI scans to inspire work in etchings, multimedia and textiles. (See her portfolio.)

Photo via "Being".

Photo via "Being".

"Being" is a film about a young boy, named Buddy, who is a caretaker for his mother, who has multiple sclerosis. He is bullied at school and finds solace in music from the 1960s. (Learn more about the project.)

Photo by  Patricia Lay-Dorsey .  

After she was diagnosed with MS at age 45, Patricia Lay-Dorsey started taking self-portraits, to process her experience. "Art has always been my most effective therapy," she said. (See more of her photographer series, "Falling Into Place".)

"Gallop," a film directed by BAFTA-nominated film director Michael Pearce, shows the life-changing impact of a diagnosis with MS, as told through a love story between two young adults. The film was launched by Shift.ms, a web-based charity.

Thought Sort, another project by Shift.ms, is an online tool that helps people recognize, manage and adapt negative emotions caused by negative thoughts, using methods of cognitive behavioral therapy (CBT).

Advertising agency Grey Australia created a campaign, "This Bike Has MS," to demonstrate the unpredictable symptoms of multiple sclerosis, using the metaphor of a misaligned bicycle.

This is my sixth blog post in a series for #The100DayProject, a project by Elle Luna. I'm naming it the #100Days ofBenevolent: an attempt to kickstart my daily blogging habit, which has been idle for years.

 

How to Design a "Transcendent Brand" for Social Impact

 

This article is part of our coverage of the 2012 Net Impact Conference in Baltimore. It originally appeared on Triple Pundit.

“What is your true purpose, my friend?” asked Udaiyan Jatar to a panel of entrepreneurs at the Net Impact Conference in Baltimore.

He was leading a discussion on Transformational Innovation & Iconic Branding: Scaling Social & Business Impact.

His consulting company, Blue Earth Network, offers services in “transformational” innovation and branding to help clients succeed.

The panel provided three case studies of small brands doing big things, including a Belgian chocolatier, a homeless agency in Atlanta, and a Native American nation.

Movement builders

Jatar opened the discussion with an explanation of how to build a movement: “It’s about a great compelling idea that is adopted by humanity, whether it’s a product, service or solution,” he said.

So-called “transcendent brands” offer a superior product, with solid leadership, mass distribution, big investments, and heavy advertising and marketing. But there is a secret ingredient: ”If you’re doing something disruptive and real, find those few people that are going to try something that you desperately need.”

He said transcendent brands always start small, and he encourages his clients to adopt the mantra of “think massive, start tiny, scale consciously.” This leads to lower risk, lower investment, a faster path to create scale, and sustainable loyalty.

Transcendent brands (or movement leaders) also put their followers at the center of their story, with calls to action like “Just do it” (Nike), “I have a dream” (Martin Luther King, Jr.) or “Gives you wings” (Red Bull).

Here are three examples of start-up social entrepreneurs, looking to make a bigger impact through iconic branding:

Case study #1: Sustainable fishery

Floyd Jourdain is the elected tribal chairman of the Red Lake band of Chippewa Indians, or “Ojibwe,” of northwestern Minnesota. The Blue Earth Network helped transform the brand of the Red Lake Nation to give it a sustainable corporate code, an accountable business model, and financial controls. In doing so, the tribe was able to “leapfrog” the typical exploitation model, so common to other indigenous groups, Jatar said, and sustain the tribe’s long-held respect for land and nature.

The Red Lake Nation contains one of the largest inland bodies of freshwater in America. Blue Earth Network helped the tribe create the Akina brand, a sustainable fishery that sells hand-caught Red Lake Walleye and ships it to customers in eco-friendly packaging.

The brand is based on the traditional philosophy that everybody in society has a role to play, and everyone is on an equal playing field. The goal of setting up the fishing business was not just to create jobs, but rather, thriving jobs.

As Jatar said, “It’s not just about selling fish, but about propagating a point of view on life, that we live our lives with honor and dignity.”

As a result of this shift in perspective, the number of people employed at Red Lake Nation’s Akina fisheries has grown from 15 to 100.

“It’s really an investment in the way people feel—working hard, feeling good and having pride,” Jourdain said. “We measure success that way.”

Case study #2: Chocolate shop

Walk down the chocolate aisle of any grocery store and you’ll notice the commoditization of the chocolate industry. There are many copycat products, all vying for customers’ attention. How do you break out of it?

Benoit de Bruyn, a bio-engineer turned Belgian chocolatier, re-branded his NEWTREE chocolate company to stand out from competitors.

His old brand focused too much on detail, listing out all the ingredients, claiming all the credentials of being organic and fair-trade, and, in general, being too product-centric.

With the new brand, NEWTREE shifted its focus from the product to the experience. As Jatar said, “It’s not about the chocolate; it’s about savoring life.”

The product packaging and company website quickly changed designs to reflect the new philosophy.

The company also opened the NEWTREE Cafe and Chocolate Shop in San Francisco, featuring recycled, repurposed, non-toxic and energy-efficient materials, to complement its eco-friendly treats.

After opening just four months ago, 50 percent of the cafe’s customers are regulars that come every day.

Case study #3: Homeless shelter

Charles Edwards, president and CEO of the Atlanta Center for Self Sufficiency, wanted to break out of the typical homeless shelter model of giving food, clothing, donations and jobs. He wanted to change the “fix homelessness” mentality into one that “unleashed the power of people to thrive.”

One of the ways he does this is through the Veterans Employment Assistance Initiative, which supports homeless veterans in their efforts to re-enter the workforce program. The center also offers its CareerWorks, providing support for the job search process.

Edwards calls his clients “VIPs,” or Visionary Innovative Partners, recognizing their high potential. The center even offers a three-day curriculum to identify clients’ passions.

“These are very smart people; you cannot be stupid and survive on the streets,” Edwards said. One client, he adds, has the equivalent of a “PhD in getting services from homeless agencies.”

Edwards is proud to say that the job retention rate of the center’s VIPs is 75 percent after 180 days.

Art, Booze and Media: The Sustainability of Craft Beers

This article is part of our coverage of the 2012 Net Impact Conference in Baltimore. It originally appeared on Triple Pundit.

At the Net Impact conference in Baltimore, craft brewmakers discussed how their industry is taking leadership on sustainability and community development, in a panel discussion on Cases and Beer: The Sustainability-Focused, Community-Involved Brewery.

One of the ways they’ve been able to do this is through nurturing the local art and media scene.

Offbeat and benevolent

The Delaware brewing company Dogfish Head touts a Beer & Benevolence program to support local nonprofit organizations through partnerships, donations and other creative charity events. Its commitment to the community is demonstrated through its involvement with local artists.

The company has several in-house artists, including the founder and president, Sam Calagione. He is responsible for much of the quirky artwork on the company’s labels and advertisements. Many of Dogfish Head’s labels also feature original work by artists like Jon LangfordTara McPherson and Marq Spusta, reinforcing the company tagline: “off-centered beer for off-centered people.”

In an interview with PsPrint, Calgione said, “We didn’t want to hire outside marketing and advertising. We wanted to do it ourselves. I designed the logo and did an unintentional, intentionally imperfect shield.”

This DIY attitude extends to all aspects of the company’s branding. For example, Dogfish Head sponsors the Off-Centered Film Fest, to showcase up-and-coming filmmakers. “Don’t have high-end gear? Film it on your phone,” the festival website says. “Can’t write good dialogue? Shoot it live and call it gritty.”

It’s no surprise, either, that the entrance to the company’s Milton, Del. brewery features the zany Steampunk Tree House, a sculpture built in part from recycled and reclaimed materials by the Five Ton Crane art collective. According to lead artist Sean Orlando, “the Steampunk Tree House was made to explore the relationship between our rapidly changing natural world and the persistent human drive to connect with it and one another.”

Alternatively powered

The Colorado-based New Belgium Brewing Co. includes environmental stewardship as one of its core values and beliefs. To market its “alternatively empowered” sustainable business story, the company has developed several creative events and initiatives, combining film, social media and bicycling.

A twist on the traditional drive-in cinema, New Belgium’s Bike-In Cinema encourages film-goers to ditch their cars for bicycles, with proceeds from the evening’s entertainment going towards local nonprofit organizations.

The company also created Clips of Faith, an 18-city touring show that pairs beer tastings with screenings of short films produced by fans. All proceeds from the beer sales benefit a local nonprofit.

Finally, there’s Team Wonderbike, an online campaign asking people to take a pledge to bike more and drive less, all in the name of the environment.

And just in time for the holidays, to bring out everyone’s inner artist: The company has a customizable online card creator. For every card designed, the company donates $1 to one of several causes, including water stewardship, sensible transportation and bike advocacy, sustainable agriculture, and climate change prevention and adaptation.