's Story (reprinted)

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Question: What do the Kentucky Derby, Lilly Pulitzer® and MitoAction all have

in

common?

Answer: K .

As we prepare for the 2nd annual K 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 "

Keery was 5 when, in 1961, Kennedy appeared in Life Magazine

wearing a Lilly Pulitzer® shift. Jackie summered on the Cape. summered

on

the Cape. It was all the connection a little girl needed to inform her fashion

sense. For young , 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 , the

grown-up opened the first in the nation Lilly Pulitzer®

Signature

Store. The shop, fittingly enough, is located on Nantucket, where the s

had a second home. The s 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

s, who were raising their two sons, Buck and , and tending to

their growing business. Then, in 2003, 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 what

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, 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. 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 's case, her brain wasn't getting the energy it needed to thrive and,

as 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,â€

said. “Some people go years. It may sound odd, but even a horrible,

life-ending diagnosis is better than not knowing.†At first, 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

. 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,†said. “I refer to that

period as

's golden months.â€

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, '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.

succumbed to the disease on August 6, 2008, at age 52, a few months after Buck

graduated from college and from high school. She was able to attend

both her boys’ graduation ceremonies. In both her business and personal life

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,†,

at

their home in Wellesley. Weeks later she entered the hospital for the last time.

As says,“’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.â€

It wasn't long after that Balcells asked to be on MitoAction's board of

directors. She had gotten to know him and his wife well, often visiting when

was in the hospital.

After hearing stories about how 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 K Derby Day Benefit for Mito was launched in 2010 in honor of

.

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. would have liked that.

Purchase your tickets today to the 2011 K 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 & and our

additional sponsors Lilly Pulitzer, WHDH-NBC, America's Compounding Center and

In The Pink.