A Tribute To Skin Of Steel Founder Susan Steel

Susan Steel, of Glenview, died in January from melanoma. Most people diagnosed with late-stage melanoma, like Steel, live for a few months. Steel lived for more than a decade. That is big news in and of itself, but what is extraordinary and inspiring is the way Steel lived and what she accomplished as she endured brain surgery after brain surgery and drug trial after drug trial.

susan steel skin of steel

Susan Steel in 2014.

Steel very intentionally lived “with vengeance”—as an alternative to just “fighting cancer.” She did so by focusing her attention on helping others—her children, friends, future melanoma patients, the world. Her impact grew with each passing month because of this. The nonprofit she founded with others to raise awareness of, education about and research opportunities for melanoma—Skin Of Steel (SOS) —will live on with vengeance, too.

“Susan founded SOS to provoke revolutionary change in the treatment and prevention of melanoma, and by God that is what we are on the cusp of!” Board Chair Steve Sullivan declares. “She strategically partnered with people all over the globe to change the landscape of melanoma, and attitudes toward melanoma, and there will be no ‘end’ to her story. She may well have the most productive afterlife of anyone the world has ever known… Our team is resolute to open the world’s first ever ‘openly collaborative melanoma tissue bank.’” These audacious, laudable plans helped SOS win a 2014 Make It Better Philanthropy Award.

skin of steel make it better philanthropy award winner

Susan Steel (center) receives a Make It Better Philanthropy Award on behalf of Skin of Steel.

In 2005, Steel was a married international real estate fund executive and former competitive skier with two children, 11 and 13, when she was diagnosed with late-stage melanoma and given that dire prognosis. She launched into seek and destroy mode, finding every possible experimental program that could help her fight against the deadly disease at places like the National Cancer Institute in Baltimore.

By 2008, the first time I wrote about her, Steel had already endured seven brain surgeries and clinical trials. She described a Tibetan Medical Monk asking her a question that transformed her thinking from just “fighting” her cancer battle to “living with a vengeance.” This energized her life and got her focused on helping others. Steel giggled and called her determined actions “leveraging cancer.”

Steel traveled with every family member to help them pursue some dream. She launched a crew program as a way to give back to her cadre of gal pals who swooped in to help her and her family during her treatments. She wanted them to focus on learning a new skill and taking better care of themselves. She surprised herself by joining them, too. According to coach Hope Poor, Steel stated: “Rowing was one of my most defiant acts.” It was also a great success. The program blossomed into today’s formidable New Trier Women’s Masters which competes across the country.

Steel started SOS in Glenview, primarily to educate local youth and others about melanoma prevention. She spoke publicly, including to rotaries and PTAs, ran fundraisers, insured that NorthShore University HealthSystem had a robust pool of blood platelet donors. As years passed and she lived on, Steel sought out fellow melanoma warriors nationally, helped rewrite medical protocol, learned that researchers clamor for more tissue to do their work, and so Steel set her sights even higher.

According to Sullivan, Steel’s life work became “helping science unlock genetic biomarkers that may very well hold hidden clues for cures.” With laser focus, Steel built a coalition and a plan to fund four collaborative tissue banks across the United States, including one in Chicago.

In 2014, Pittsburg’s Woiner Foundation hosted a forum announcing that the University of Pittsburgh Medical Center will be one of the Skin Of Steel tissue banks. This is the legacy that SOS continues to champion with a vengeance. Success insures that Steel’s legacy will transform life for melanoma patients and their families around the world in perpetuity.

By choosing to live with vengeance and help others, rather than just focusing on the fight she was destined to lose, Steel was able to live a decade longer than anticipated, help her children pursue dreams and grow into lovely adults, found a blossoming athletic program for women, inspire others to live courageously and with vengeance, and eventually likely transform melanoma research and outcomes around the world.

Thank you, Susan Steel. God rest.

Why I’m a Fan of The Chan Zuckerberg Gift and The Spirit Behind It

Mark Zuckerberg Priscilla Chan daughter max

Mark Zuckerberg and Priscilla Chan with their daughter, Max. (Photo from Facebook)

“Our daughter and everyone in her generation should be able to live much better lives… The only way to reach our full human potential is if we are able to unlock the gifts of every person around the world… We have a basic moral responsibility to tilt our investments somewhat more to make that happen.” Mark Zuckerberg

If you haven’t yet done so, I encourage you to watch this two-minute video of Mark Zuckerberg, 31, and his wife, Priscilla Chan, 30, explaining why they launched the Chan Zuckerberg Initiative (“Initiative”) with 99 percent of their Facebook stock (worth about $45 billion before last week’s market pull-back) in honor of the birth of their daughter, Max. Their goal is to “tilt investments faster” toward strategies that will ensure better education, healthcare and communities for all children in their daughter’s generation.

Big goals. Great goals.

In the video, Zuckerberg and Chan look and sound not like billionaires, but rather like quintessential millennials. They’re given the greatest gift of all—a child. In return, they want her and all other children in her generation to inherit a better world. Therefore, they “gift” 99 percent of their wealth in order to lift up 100 percent of the world.

Unfortunately, Zuckerberg is a target just by being his young, visible, uber-successful self. Of course, the world quickly responded with polarizing positions. The Guardian’s Michele Hanson quipped, “Could they not have given their money away without the sloppy letter to their daughter and the rest of us? Wasn’t that a bit show-offy? Isn’t $45bn rather too much for one family to have in the first place? And wasn’t it a bit measly of Facebook to pay only £4,327 UK corporation tax last year?”

Criticism also flowed off the system that allows vast wealth to vest in entrepreneurs like Zuckerberg, thereby giving them far greater power over philanthropic decisions and policy-making too. As Inside Philanthropy’s David Cameron writes, “While there are plenty of good people emerging at the highest levels of philanthropy like Zuckerberg and Chan, there are also less appealing actors. Close your eyes for a moment and imagine that… it was the Koch brothers who had pledged to use their entire fortune (of $85 billion) to shape the direction of U.S. society. The picture would look a bit different, right?”

I put “gift” in parentheses because what the Chan Zuckerberg’s actually did was place their stock in an LLC, with a pledge to reinvest any profits and an implication that they eventually will gift all of it to charity. According to The New York Times, the couple chose an LLC instead of a nonprofit structure because they want the flexibility to try ideas through for-profit businesses and the freedom to lobby on behalf of the most effective policies, as well as directly fund nonprofit best practices.

Confusingly, Forbes heralded their “gift” as an example of stock ownership transfer through a charitable donation that the rest of us can and should emulate. So, experts are confused about whether this “gift” is or isn’t a charitable donation, just as pundits are divided in their assessments of the wisdom of Chan Zuckerberg’s generosity.

I’m neither a charitable gifts expert, nor a pundit. But, as Founder and Publisher of Make It Better Media, I am a bit of an expert on demographics and the behavior of a well-educated, affluent audience.

As a demographic group, millennials expect mission, meaning and social good to be embedded in their work and everyday lives. They want maximum impact with their time and dollars. The Chan Zuckerbergs are a shining example of this.

But it’s not just millennials who are inclined to do good with their everyday lives. We’ve built a successful media company on proof that most people want to and will support good values if you make it easy for them to do so.

Zuckerberg was smart and lucky enough to launch a transformation in the way our world connects and communicates. I love that he and Chan can apply those insights and their billions to finding and supporting the most effective and efficient ways to educate every child, and provide them with good healthcare and safe, diverse communities. Hopefully, their LLC will allow them to skirt many of the traditional bureaucratic roadblocks to success.

As a society, we shouldn’t be bickering about methodology, rather we should appreciate all authentic efforts to move the needle forward for humanity and facilitate collaboration among all interested parties who bring expertise or resources to the table.

I like that Zuckerberg and Chan give themselves permission to try, fail and learn as they go. “It’s hard to [change complex systems] in the short term,” Zuckerberg states. “Like doing anything well in the world, it takes practice. In the projects that we will do in education, science, health, community building, we will learn lessons over time and hopefully get better and better.” That’s the winning attitude of a successful entrepreneur. And that is the attitude that will transform our world for the better faster, too.

Everyone wants their dollars, time and lives to create impact. The Chan Zuckerberg’s are in an enviable position with respect to impact. But please, let’s not let envy or frustration with current political, social or economic dynamics get in the way of celebrating their decision and its potential impact for all children in the future. Instead, let’s please celebrate the birth of Zuckerberg and Chan’s daughter and Initiative, and rejoice that they embody the millennial spirit.

As Chan says, “We need to ensure that the future is better than today.” This is our basic human yearning. Let’s please hold these idealistic new parents up as examples for all to follow.

 

 

 

Live Blogging our Awards Today – Please Follow And Celebrate With Us

Please Follow Our Awards Delivery Today – National Philanthropy Day

“If you have the chance to help someone, and you don’t do it, then you are wasting your time on this earth.” – Roberto Clemente (and Mark George of the Music Institute Of Chicago)

In honor of National Philanthropy Day, Make It Better Media and its Foundation recognize its 2013 Philanthropy Award winners with an all-day awards delivery tour and evening celebration, which will be live blogged here and Tweeted at twitter.com/makeitbetterNS.

Please follow and celebrate with us.

View the video from last year to see just how fun this is: http://vimeo.com/58231212.

Last year, eight organizations benefited from the awards, using the videos prominently for marketing on the web and at fundraising events.

“With the help of that video, we were able to increase our fundraising by 64 percent,” says Tom Daily, Program Director of Great Lakes Adaptive Sports Association, a 2012 Philanthropy Award winner.

“I can’t think of a better gift to give a young nonprofit than a way to effectively communicate their mission,” says Robin Lavin, Executive Board Director of SPARK Chicago, Philanthropy Award 2012 winner. “With these fabulous videos, we’ve done exactly that.”

Last year’s winners joined the judges panel which included judges from sponsors Walgreens, JPMorgan. Wintrust, and Autohaus and venture philanthropy experts Liam Krehbiel, Founder of A Better Chicago, and Ben Kovlar and Ron Levin, of Invest For Kids, as well as Make It Better staff.

A full list of last year’s winners and their organization videos are available on Make It Better’s site: www.makeitbetter.net/make-a-difference/make-a-difference/4883-philanthropy-awards-2012.

Please Shop to Support These Schools and Great Local Businesses

Kudos to the Lake Forest/Lake Bluff merchants, Chamber of Commerce, city government and the Spirit of 67 Education Foundation for creating a perfect way to support schools and local businesses with this weekend’s Red Carpet On The Green.

A hundred percent of all your purchases for the next 2 days at the following stores will be donated to the Foundation in your honor:

Alexandria Collection

Blue Mercury

EJ Mirage

Forest Bootery

Izze & Jo

J. McLaughlin

Kiddles

Lake Forest Resale Shop

Lake Forest Shop

Lilly Alexander

Mustard Seed Gallery

OSKA

Sarah Campbell

Talbots

Three Sisters

TSE Cashmere

Particular thanks to the Foundation’s Martha Zeeman, the Chamber’s Joanna Rolek and the Lake Forest Shop’s Ellen Stirling for masterminding this virtuous circle.

Examples of how the Spirit of 67 spends these proceeds:

How to Judge a Charity

How To Judge A Charity – Giving For The Maximum Good

With a little research, you can accomplish maximum good with each dollar you donate.

Easy tips here from Make It Better. Here’s a summary below;

Experts in the philanthropic field recommend doing your research before writing a check to an organization.

“Review charities using a three-legged stool approach,” says Sandra Miniutti, chief financial officer of Charity Navigator, America’s largest independent charity evaluator. “The first leg is financial performance, what is the financial health of the organization? The second leg is accountability and transparency. Finally, what are the results of the work? Are they having impact?”

So how can you best determine which charities to finance? After verifying that the organizations vying for your dollars are 501(c)(3) nonprofits, follow these guidelines:

1. Identify your cause. What are your specific goals? If you want to support programs for autistic young adults, do you want to donate to the national Autism Research Institute, or someplace more local like Our Place of New Trier Township?

Adriane Glazier, a consultant who acts as an intermediary between donors and charities at Foundation Source, suggests that donors ask themselves questions like: “Is your goal to help find a cure for cancer in general? Or do you want to fund a particular research project that will make a difference in specific lives? Is leaving a legacy part of your goal?”

2. When telemarketers call, hang up, says Charity Navigator’s Miniutti A 2011 study in California found that even some prominent charities, including Amnesty International, lost money that was raised through professional telemarketing fundraising operations. Overall, the charities got back an average of just 10 percent of funds raised by for-profit fundraisers.

3. Get beyond the storytelling. The emotional tug of your heartstrings can lead you astray when it comes to giving.  What you really need to know is if the charity can articulate its challenges and goals. Check out the website. Volunteer and find out firsthand what’s happening.

4. Do they need your money? According to Adriane Glazier, some organizations with large endowments may not be looking for smaller contributions.

5. Are donations used wisely? This gets back to the accountability and transparency question. Charity Navigator recommends that a baseline of 75 percent of donations be used for programs, 25 percent for administration costs. “Keep in mind that museums have higher overhead, food banks are the opposite,” Miniutti says. “Try to benchmark against similar organizations.”

Executive compensation is a thorny issue. Remember that these execs aren’t working for free, but Charity Navigator’s Miniutti says “When salaries approach $1 million, that’s unreasonable.”

6. Consider an annual charity budget. Just as it sounds, identify each year how much and where you want your money to go. Create a reserve fund for disaster relief that you can distribute on an as-needed basis.

However you choose to donate, consider these words from Andrew Carnegie: “It is more difficult to give money away intelligently than to earn it in the first place.”

Harry Winston’s Hope Bracelet Benefitting “A Better Chicago” – Only 2 Left!

Recommended: A “Hope Collection Bracelet” by Harry Winston – the perfect present to someone you love and to strategically make life better for others.

The Hope Bracelet

Learn more about the bracelet here:  http://www.harrywinston.com/HopeCollection.

100% of the proceeds benefit “A Better Chicago,” the brilliant venture philanthropy brainchild of Liam Krehbiel.

Liam Krehbiel in Michigan Avenue Magazine. More at http://abetterchicago.org/about-us/news/

Learn more about “A Better Chicago” here: http://abetterchicago.org/.

But hurry – because there are only 2 bracelets left in Chicago of the original 25.  That’s probably thanks to the great work of Diana Hall.  She understands win/win/win, luxury, giving back with heart, strategic vision and Chicago’s unique culture of civic support for philanthropy that builds a better Chicago:

Diana Hall