In this year’s Philanthropy Issue we bring you the stories of four people inspiring others in our community.
Carrying on Bo’s Legacy
On Sept. 28, 2012, Sister Bay resident Bo Johnson, 13, died after a yearlong battle with Extramedullary Acute Myeloid Leukemia. It was a battle that brought together the entire Door County community and inspired the creation of the GO BO! Foundation, through which his legacy carries on today.
While orange ribbons and shirts filled the peninsula in support of Bo’s fight (which began in October 2011), Clark Erickson, whose son was friends with Bo, organized a GO BO! Fund to support Bo and his mother, Annika, through his treatment.
Using the funds, Bo purchased a tablet computer to keep in touch with friends on social media and a few other items. When it was clear that he needed nothing else, Bo made a simple request.
“He said, ‘I don’t need anything, mom. I don’t want anything else. Can’t we just put this in something else where we can help other kids?’” Annika recalled.
While Bo continued his courageous fight, Annika set forth to make her son’s wish come true and in the winter of 2012, just months after he passed away, the GO BO! Fund officially became the GO BO! Foundation.
Its mission is three-tiered: to bring hope to children with life-threatening medical conditions by funding research, supporting treatment, and helping families during times of financial need.
It was a mission born from Annika and Bo’s shared experience staying at the Children’s Hospital of Wisconsin in Milwaukee while Bo underwent chemotherapy and a bone marrow transplant. Day in and day out, Annika witnessed the reality faced by the children on the Hematology, Oncology and Transplant Unit, where Bo stayed during much of his treatment.
While teddy bears and yo-yo’s brought smiles to their faces, those items weren’t making a real difference in the children’s lives. What needed to happen was research to prevent, and someday cure, life-threatening conditions and in the meantime, to provide financial assistance to the families whose lives were turned upside down by a diagnosis.
Since its inception two years ago, the GO BO! Foundation has done just that, providing financial assistance to more than a handful of Door County children and their families, as well as major donations to both the Midwest Athletes Against Childhood Cancer, Inc. (MACC) Fund and the Children’s Hospital of Wisconsin (CHW).
In fact, under Annika’s leadership and strict adherence to the mission of helping fund research, the foundation served as a major catalyst in securing funds to support bone marrow transplant research at CHW through its first major donation.
On Feb. 13, 2013, the GO BO! Foundation contributed $75,000 to create the Dr. David A. Margolis Chair in Pediatric Bone Marrow Transplant, which would help secure funding from the National Institute of Health for research projects.
At the time, Dr. David A. Margolis (program director for bone marrow transplants at CHW and one of Bo’s doctors) had been fundraising for eight years to create the pediatric chair. Newspaper photos of the GO BO! Foundation’s donation inspired further donations and by the end of February 2013, Dr. Margolis had raised the remaining funds and secured the chair.
For Annika, that ripple effect was the result of the very necessary spark she feels inspires people to act, be it on behalf of the GO BO! Foundation or other organizations.
While she serves as the foundation’s go-to individual, Annika is quick to point out that she was spurred to action by each and every individual who has contributed to the GO BO! Foundation.
“We kind of want to start a chain reaction, no matter what it is you want to do,” Annika said. “There’s got to be something that sparks you to do it.”
– Alyssa Skiba
Helping the Fight Against Breast Cancer: Carrie Baldwin Smith
It was the fall of 1997 when Carrie Baldwin Smith’s mother, Sue Baldwin, first received the devastating diagnosis: she had breast cancer. Like all women faced with the startling find, Sue looked ahead at what would be a painful and difficult road – two years of chemotherapy, thousands of dollars in medical expenses, and complete disruption of her normal life. The good news came two years later when Sue was declared cancer-free.
It is a storyline not unlike those of other women who have battled breast cancer. In fact, according to the American Cancer Society, almost 300,000 women are estimated to be diagnosed with breast cancer in the U.S. in 2015 – approximately 13 percent of whom will lose their fight.
But what is uncommon in Sue’s story is the wake of positive actions that have occurred here in Door County following her remission.
Sue’s daughter, Carrie, was only 21 years old when her mother faced her first bout with cancer (Sue later had a second bout, which she also survived). On the 10-year anniversary of her mother’s remission, Carrie decided that the fortune her family had experienced in Sue’s survival warranted a grander gesture of goodwill to those still engaged in the battle.
With her contagious charisma and an entrepreneurial nature, Carrie used her passions for golf and event planning to organize a golf event, “The Pink Classic: An Event to Prevent.” Despite great competition for charity dollars and the unknown factor of a new and unproven event, Carrie successfully rallied 120 golfers and dozens of community members to participate and raise money for the cause. The event wildly exceeded expectations, raising more than $20,000.
“There was such a draw to it,” Carrie said of that first year. “We made it fun. We made it a positive event.”
Through the Pink Classic, Carrie has revealed a wide network of Door County individuals impacted by breast cancer (both directly and indirectly) seeking to help those in need – not just in terms of the harsh medical realities, but also in terms of how breast cancer patients experience this scary time in their lives. That network has blossomed into a broad legion of volunteers and event participants who together have raised more than $100,000 since the event began in 2008.
In 2013, Carrie and the Pink Classic organizers officially formed the Sue Baldwin Fund, a nonprofit providing breast cancer awareness, prevention and care for Door County residents. The fund has helped women by providing financial support in the form of gas cards, rent, medical bills, propane, tires and utilities. It has also provided care packages to Ministry Door County Medical Center for women battling breast cancer and funded one patient’s attendance at a breast cancer recovery retreat (read more about recovery retreats on page 23).
“It’s a scary time,” Baldwin Smith said. “It’s hard for a woman, especially when they’re losing a body part, to wrap their head around it. I want women to know there is a community out there that will help you. I want be here when they need to reach out to somebody.”
Helping Cancer Survivors Livestrong: Christine Webb-Miller
Christine Webb-Miller’s eyes light up as she speaks about her work with cancer survivors. The more she talks, the more animated she becomes and her hands move fast enough to raise an average person’s resting heart rate. Her passion for her work and her compassion for the people she works with is palatable.
Webb-Miller is the program manager for the Door County YMCA’s Livestrong, a small-group exercise and movement program designed to empower cancer survivors through cardiovascular strength and flexibility training.
“Cancer takes away control. My job is to empower people to regain that control by regaining their strength.” Webb-Miller cites studies that show that even moderate physical activity can impact emotional well-being and may even lower the risk of recurrence. “One spills over into the other. Making a move in the right direction, just coming to class twice a week, can change a mindset that leads to other positive changes.”
One of Webb-Miller’s goals is to demystify the YMCA experience. “There might be a perception out there that everyone who uses the Y is a fitness nut with a perfect workout wardrobe, and that’s not the case. And things like tai chi and yoga can be intimidating until you try them. I work hard to break down barriers and there’s nothing more gratifying than having someone who was uncertain about a new activity say ‘I can do this!’”
“One thing I’ve learned is that cancer survivors are tough. There’s a survival instinct that kicks in and they’re tougher than they may even know. It’s fun to watch people get stronger, to hear that they have more energy or that it’s easier for them to lift their grandchildren. It’s fun to see them surprise themselves.”
Webb-Miller had been teaching fitness classes at the YMCA for nearly 25 years when she was approached to manage the Livestrong program. She underwent extensive training through the national YMCA and instructed her first class in 2011.
“I have a background in exercise and movement, but there’s a lot more involved with this. It goes way beyond training someone to use a treadmill or weight machine. I’m here to listen and I do a lot of that. It helps that I’m a stranger, but not a stranger. I’m a safe ear. I can listen without the judgment or investment a friend or family member might have.
“Cancer creates a new norm for people. Sometimes the people in your life want or expect you to go back to the old norm and that’s understandable. When you’re here, it’s okay to admit that this might not be happening in the way others wish.”
Webb-Miller emphasizes that participants can share as much or as little as they’d like, but her goal is that they all go away feeling supported.
“We know what it takes for people to make it to this class and we all ‘get it.’ We’ve had people get sick in the class, we’ve had them take off their wig for the first time or adjust a prosthesis in the pool. It’s a level playing field and there’s a sense that we’re all in it together.”
Webb-Miller knows that she’s changed lives, but the change isn’t one directional. “I’ve changed, too. Working with cancer survivors has made me a more empathetic person. I’m more considerate when people are going through tough times, not just with cancer but with other challenges, too. I give people some of my time and that’s the most important thing any of us can do.’
For more information on the YMCA’s free, 12-week LIVESTRONG program, contact Christine Webb-Miller at (920) 743-4949 or [email protected].
-Laurel Duffin Hauser
Overwhelmed by Kindness: Jill Ostrand-Harding
When Jill Ostrand-Harding says she’s overwhelmed, she has every right to be. In August of 2013, she went from kayaking with her family one day to being hospitalized the next. “I opened my mouth to answer a question and my words came out ‘twisted.’” She was diagnosed soon after with Glioblastoma, level 4 inoperable brain cancer.
Her treatments have included chemotherapy and radiation. She’s had her skull screwed to a metal collar. She’s endured muscular damage on the right side of her body as a result of the initial biopsy. She handles all of these things stoically. “Every once in a great while, I allow myself a ‘pity party’ and cry my eyes out. They tell me it’s healthy,” she laughs.
Today when her eyes tear up, it’s not because of what she’s endured physically; it’s because of the overwhelming number of kindnesses she’s received.
“I feel so blessed. I can’t believe how many people have sent notes or delivered food or left gas cards. Many days, I’d lie in my bed resting and hear someone tiptoe in and leave a casserole on the counter. We left our back door open all the time.”
One of the things she receives each month is a card informing her that a group at St. Joseph’s Church has prayed for her. “I’m not even Catholic! There are groups from other churches that do the same, people I don’t know. I find that overwhelming. I’m a private person about my faith, but the power of prayer has become very real to me.”
And it’s not just the kindness of friends and strangers that overwhelms her. Ostrand-Harding’s stepdaughter Kendra surprised her at Christmas with a box of brightly colored paper cranes, hundreds of them hand-folded, one for each day of the year. “She did this over the course of a semester. On the wing of each crane she wrote a word.” Ostrand-Harding pulls out one that says “courage.” She then picks up a small note that her husband Mike left on the counter that morning – three or four sentences of encouragement ending with ‘I love you.’ She smooths it between her hands. “I save every one of these. He probably doesn’t know that.”
Ostrand-Harding looks back to the time before her diagnosis and recalls having slight headaches that she attributed to stress.
“I was always stressed. I was stressed about work and stressed about bills.” She shakes her head and laughs. “I was stressed about whatever I could find to be stressed about! It’s how I interacted with the world. I worked in corporate America and always pushed myself. In some ways, I’m afraid I wasn’t a very nice person. I was so busy being busy.”
Ostrand-Harding is intent on being less busy (“I played with my cat for half an hour the other day!”) and returning the kindness she’s received.
“Cancer changes you. I sometimes wonder if it’s what had to happen to me to make me slow down. I don’t want to be one of those people who think they’ve got it all figured out, but if I can help others who are going through this, I would like to. I would like to help them not be so afraid. If I’ve got three days or three years or many more, I want to use them giving back.”
Jill Ostrand-Harding lives with her family in the home she grew up in in Sturgeon Bay. Her extensive volunteer activities include working with her son’s wrestling program at Sturgeon Bay High School, teaching Sunday school and serving on the board of Door CANcer, a group that aids cancer patients and their families with emergency funds while they are in treatment. Information about Door CANcer is available at doorcancer.com.
– Laurel Duffin Hauser