A story of a brave woman who fought seizures and strokes, and whose legacy
survives to promote better understanding.
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>Question: What do the Kentucky Derby, Lilly Pulitzer® and MitoAction all have in
>common?
>Answer: Sandra K Russell.
>As we prepare for the 2nd annual Sandra K Russell Derby Day Benefit for Mito, we
>invite you to enjoy the history of this event and a peek into the life of the
>special woman for whom it is named.
>Join us May 7th at Mandarin Oriental, Boston to celebrate the Kentucky Derby &
>to support all who live with "Mito"
>Sandra Keery was 5 when, in 1961, Jacqueline Kennedy appeared in Life Magazine
>wearing a Lilly Pulitzer® shift. Jackie summered on the Cape. Sandra summered on
>the Cape. It was all the connection a little girl needed to inform her fashion
>sense. For young Sandra, a clothing devotee in general, an affinity for the fun,
>carefree, preppy look of Lilly Pulitzer® was born.
>Fast-forward to 1997, when, with her husband, businessman Gordon Russell, the
>grown-up Sandra Russell opened the first in the nation Lilly Pulitzer® Signature
>Store. The shop, fittingly enough, is located on Nantucket, where the Russells
>had a second home. The Russells chose the name In the Pink for their store and
>then set out to expand to nine seaside locations from Cape Cod to the coast of
>Maine.
>In the Pink was squarely in the black, and life was going swimmingly for the
>Russells, who were raising their two sons, Buck and Jonathan, and tending to
>their growing business. Then, in 2003, Sandra started complaining that she
>couldn't hear her customers well enough during busy moments in the store. Her
>husband was also noting that "she wasn't keeping up as well, lacking energy and
>also focus." Some years before, doctors uncovered in Sandra what Russell called
>a "leaky kidney – protein in her urine," which was kept under control with
>medication. No connection to mitochondrial disease was yet made.
>All still seemed normal enough when, in October 2004, Sandra suffered her first
>seizure and stroke, a full-blown affair during which she lost consciousness and
>that left her having a bit of trouble communicating. Her sons at the time were
>both freshmen – one in college, one in high school. Sandra spent 17 days in
>Brigham and Women's Hospital but no apparent cause was found. Several months
>later she was diagnosed with mitochondrial encephalopathy with lactic acidosis
>and stroke-like symptoms, or MELAS. It's one of 43 types of mitochondrial
>disease that have been classified to date, all falling under the umbrella of
>muscular dystrophy and together striking more commonly than cystic fibrosis. The
>mitochondria are the energy powerhouses of all the body's cells, and when they
>malfunction, the body doesn't work properly.
>In Sandra's case, her brain wasn't getting the energy it needed to thrive and,
>as Russell put it, "It was short-circuiting." In hindsight, he had seen
>signs. "A hallmark of mitochondrial disorder is exercise intolerance and
>temperature intolerance," he explained. "When we were dating, she had to quit
>after a couple of games of tennis – even when she was beating me. I remember
>looking at her face – it was all flushed and red. This was back in 1983. In
>1987, I remember her pushing Buck in a baby carriage through some sand on a hot
>day. She stopped and said, 'I think I'm having a heart attack.' Again her face
>was flushed. It was transitory but those were symptoms.
>On some level, she was fighting this for her entire life.
>"As far as the diagnosis, we were fortunate to get it as soon as we did,"
>Russell said. "Some people go years. It may sound odd, but even a horrible,
>life-ending diagnosis is better than not knowing." At first, Russell said, "I
>was wildly searching for a cure. That's what you do when faced with something
>like this. I was up all night surfing the Internet. Then it dawned on me that I
>was wasting my time because there wasn't going to be anything I could do to save
>Sandra. So I focused on managing her quality of life to the best degree
>possible," which included shuttering the doors on a couple of In the Pink shops
>to spend more time with his wife. Their locations shrunk from nine to six.
>"Other people have their golden years," Russell said. "I refer to that period as
>Sandra's golden months."
>Much of the help came from MitoAction, a Boston-based organization whose mission
>is to improve the quality of life for people with mitochondrial disease through
>support, education, advocacy, and outreach initiatives.
>"The impetus behind starting MitoAction," says Executive Director Cristy
>Balcells, herself the mother of a 7-year-old daughter with mitochondrial
>disease, "was that there was no resource, no organization providing the
>day-to-day support patients and their families need." MitoAction's network of
>patients and their loved ones currently spans the United States, Australia, the
>United Kingdom, and Canada. "It's about quality of life," she says.
>Support couldn't halt the course of the disease, however, and with each seizure,
>which would come after a quiet plateau period, Sandra's brain function
>deteriorated a bit more, from an estimated 97 percent after the first episode to
>84 percent after the second, 73 percent after the third, and so on. Sandra
>succumbed to the disease on August 6, 2008, at age 52, a few months after Buck
>graduated from college and Jonathan from high school. She was able to attend
>both her boys' graduation ceremonies. In both her business and personal life
>Sandra was supremely driven and goal-oriented. Not only did she travel to North
>Carolina to take part in all the festivities surrounding Buck's graduation, she
>planned, prepared, and hosted a graduation dinner for her "baby," Jonathan, at
>their home in Wellesley. Weeks later she entered the hospital for the last time.
>As Russell says,"Sandra's boys were her life; she put her heart and soul into
>raising them to be great young men. She knew she had accomplished her most
>important goal."
>It wasn't long after that Balcells asked Russell to be on MitoAction's board of
>directors. She had gotten to know him and his wife well, often visiting when
>Sandra was in the hospital.
>After hearing stories about how Sandra loved to celebrate the arrival of spring
>by hosting annual parties at their home on Kentucky Derby Day, MitoAction
>decided to use this as inspiration to create an annual fundraising event. And so
>the Sandra K Russell Derby Day Benefit for Mito was launched in 2010 in honor of
>Sandra.
>Simultaneously, Gordon mentioned to Janie Schoenborn, whom he calls "the big
>mucky-muck for design" at Lilly Pulitzer®, that "any time I see images depicting
>a mitochondrion or the human genome, I'm struck by the color and shape of these
>things that I'm looking at. They remind me of Lilly prints." Schoenborn asked
>him to show her what he meant, so he sent her about a dozen images of
>mitochondrial cells and human genome components. Schoenborn and her design team
>got to work and a beautiful Lilly Pulitzer® silk blend "Mito Murfee" scarf of
>hot reds, deep blue, tropical greens, and pale pink was born. A depiction of
>mitochondria appears in the red flowers (and, true to Lilly, you have to be "in
>the know" to recognize it), while the green ribbons of color represent the
>awareness icon for mitochondrial disease. The human genome is in there, too. The
>limited-edition scarf was launched at the 2010 SKR Derby Day Benefit and became
>available at all In the Pink locations and on inthepinkonline.com. All net
>profits of each scarf support MitoAction.
>At the 2011 SKR Derby Day Benefit for Mito at Mandarin Oriental, Boston, Lilly
>Pulitzer® will debut its new Mito Tote. Once again all net proceeds will benefit
>MitoAction and the tote will be available at all In the Pink locations
>and inthepinkonline.com.
>Talk about fashion forward. Sandra would have liked that.
>
>Purchase your tickets today to the 2011 Sandra K Russell Derby Day Benefit for
>Mito on Saturday, May 7, at Mandarin Oriental, Boston!
>
>Cocktails Courtesy of Grey Goose Vodka.
>Special Thanks to our Winner's Circle Sponsor Choate, Hall & Stewart and our
>additional sponsors Lilly Pulitzer, WHDH-NBC, America's Compounding Center and
>In The Pink.
>
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>Mitochondrial Disease Action Committee Copyright © 2009 All rights reserved.
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