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THe North shore weekend
6/21 – 6/22/14
Financial firm focuses on future of those with special needs ■ by joanna brown Glencoe resident Mike Walther was not yet 40 when he first considered one of life’s great questions, posed to him by his wife, Beverly. What would you do if you retired right now? Looking back, Walther said the answer came easily. His dream job was to simplify financial planning for families with specialneeds members. A certified financial planner and certified public accountant, Walther had long worked with well-off clients on plans to attain their retirement goals — but his passion lay in the work he conducted away from the office, with the National Association for Down Syndrome and with the Northern Suburban Special Recreation Foundation. A year after his wife’s question, Walther merged his professional expertise with his personal interest and opened the doors of Oak Wealth Advisors. The Deerfield firm provides financial advice and other support to families with special needs. Most of Walther’s clients have a child who has been diagnosed with a disability; others are caring for an ailing parent or a spouse after a catastrophic injury creates the need for full-time care. “There are challenges for both the older person who is losing the ability to care for himself or make sound decisions and the younger person who has indicated that they won’t ever develop these skills,” says Walther, whose firm manages more than $100 million. “The families all need someone to step in and navigate with them when they are overwhelmed by all the things they need to deal with.”
Consider this estimate: Autism Speaks puts the cost of caring for an autistic person over his or her lifetime at $2.3 million. Health insurance helps defray the expense, but families shoulder much of that burden, as the support available from government programs is constantly in flux. Walter compares himself to a pilot for the families. “Ninety percent of flights are not on course but 99 percent land safely,” he said. “People have retirement goals, and we can’t forget about your needs. Maybe your goal is for all your kids to go to college, or maybe it’s that you want your child with special needs to have safe housing and oversight and opportunities for employment. These are not mutually exclusive.” At her desk down the hall, Director of Special Needs Planning Randi Gillespie works with Walther’s clients to navigate everything except their financial needs. She connects families with social services, educational resources and other support programs. “I develop plans for families so that they feel they have a course for the lifespan of their family, not just for one child,” said Gillespie, a Northbrook mother of three. “There is no crystal ball for anyone, and the unexpected is very scary for people. But there are benefits for the child and support for the family, no matter what they want to do — if they want to go to Disney World or college or something else entirely.” It’s a resource she sought nine years ago when her middle child, Maddy, was born with Down syndrome. The first financial advisor Gillespie and her husband visited six months after Maddy’s arrival made their heads spin. They put their financial plans on
Oak Wealth Advisors’ Randi Gillespie, Mike Walther and Jan Gargula stand in front of a painting in their office created by a disabled adult. photography by joel lerner
hold for several months out of frustration. In contrast, Walther points to his younger brother as an example of what good planning can accomplish. Sean Walther is autistic, and doctors suggested early on that he would never walk or talk. But the Walther family persevered, and at age 44 Sean is a high school graduate with a full-time job, an active social life with his peers, and a passion for golf. “What’s not to like about a life like that?” Walther says. “Poor planning leaves resources on the table.” Gillespie offered advice for families who feel
as overwhelmed as she did nine years ago. “You have to educate yourself and learn as early as you are able to,” she recommends. “When my daughter was born, I wanted to tell someone what was important to me, even if on any given day my answer was ‘I don’t know.’ And I wanted someone who could answer every question I had. “Find an advisor who is interested in something more than the money and pick someone who is like you, understands your dynamics and your special needs. I have three kids — not just one with Down syndrome.” ■
Steeling herself to battle melanoma — her own and others ■ by jenna schubert
For Susan Steel, founder of Skin of Steel, melanoma is not just a personal struggle. The Glenview resident — now entering her 10th year battling the disease — works closely with melanoma-impacted families in Lake County. Recently, Steel dealt with two fathers who lost their battles with melanoma and, between the two of them, left behind five children under the age of 10.
“You don’t survive this disease without full-on battle, and even with that, the odds are very stacked against you.” | Susan Steel “These two men were in their 30s and early 40s,” says Steel, whose not-for-profit organization raises public awareness of melanoma and provides funds for related research. “The age of people diagnosed with melanoma is dropping.” In fact, melanoma is the most common form of cancer for people ages 25 to 29, according to the American Melanoma Foundation. More disturbing still is Steel’s experience working with young pregnant mothers diagnosed with melanoma, whose babies develop melanoma in vitro. After receiving her own diagnosis in 2005 and being told she had a 15 percent chance of surviving the next five years,
Steel realized that Chicago was lacking in innovative melanoma clinical trials. So she embarked on years of traveling around the country for treatment. “It was driving me crazy that I had to keep getting on planes [to travel for clinical trials],” Steel says. “I could afford to do that, and I have the financial and personal resources to do that, but most people don’t have those. Is my life worth any more than theirs? No way! It’s crazy. We’re better than this.” Most shocking to Steel, in the years following her diagnosis, was that the Midwest had no melanoma tissue bank — which provides fresh frozen melanoma tissue for research purposes. As a result, Skin of Steel is working to build one in Chicago, which would function as part of a network (with additional branches in Pittsburgh, Portland, and San Francisco). With the Robert H. Lurie Comprehensive Cancer Center of Northwestern University as their partner, the team at Skin of Steel hopes to make its goal a reality as soon as possible. Skin of Steel is aiming to raise $3.3 million, which would cover the melanoma tissue bank’s first three years of operation. So far, approximately $750,000 has been donated ($100,000 of which was raised at Skin of Steel’s recent “Battle of the Bands: Rock Out Melanoma” fundraiser at Fields Volvo in Northfield). In the meantime, Steel and her board members will continue fighting against melanoma with any resource they can muster.
Val Guild, executive director of the AIM at Melanoma Foundation in San Francisco, and Steve Sullivan, Skin of Steel board chair of Winnetka, join Skin of Steel founder Susan Steel of Glenview.
Despite entering her 10th year as a stage IV melanoma patient — which is virtually unheard of — she persists in her work. “Melanoma has taught me that you have to be a warrior, because this is not for the faint of heart,” Steel says. “You don’t survive
this disease without full-on battle, and even with that, the odds are very stacked against you.” For more information on Skin of Steel, visit skinofsteel.org or email info@skinofsteel.org ■