Get a Haircut, Help Fund Research on Rare Disease: June 13

Cut Out Mito is the hip sounding fundraiser being held on June 13 from 10 to 4 at Everything’s Hair Salon in Larchmont to benefit research into mitochondrial disease, an illness in which very little work is being done to find treatments and cures.

This disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fail to produce enough energy for cell or organ function. Mitochodria are tiny organelles found in almost every cell in the body and are considered the powerhouse of the cell – necessary to sustain life. Responsible for more than 90% of cellular energy, failure of mitochondrial function causes cell injury, leading to cell death. When multiple organ cells die, organ failure results.

Joey Mileti’s parents started the JDM Fund to help raise awareness and support for research on mitochondrial disease.

The disease affects about 1 in 4,000 individuals in the United States.

Locally, in 2006 a boy named Joey Mileti – at 2 ½ years old – was given 3 months to live. His parents, Joe and Gaby Mileti, learned that there was little research available to help their son and others. They established The JDM Fund for Mitochondrial Research (a 503c3) to raise awareness of the disease.

The symptoms of the disease vary widely. There may be poor growth, loss of muscle coordination, neurological problems or seizures. There may also be heart, liver and kidney disease. Joey’s motor function is severely affected, including his walking and coordination. Since there is no approved treatment for the disease, Joey is on a cocktail of vitamins to try to improve the function of the mitochondria and slow the progression of his illness.

Since the JDM Fund’s inception, it has raised $200,000 – with every dime going to research, and nothing to overhead or salaries. This has been accomplished with volunteers and donations.

On June 13, Everything’s Hair Salon will be hosting a “Cut Out Mito” Fund Raiser to raise both awareness and money for this disease.

“When my client Gaby Mileti told me about her son Joey, it really affected me because he is the same age as my son Joey. And, it actually hit home twice for us at the salon because a sister of one of our stylists has a form of the disease,” said Ginger Pulcino, co-owner of Everything’s Hair. “Our whole team is pleased they can help out in this way.”

All stylists will be donating their day off for the Sunday event. They will cut hair and donate 100% of the proceeds to support the JDM Fund. Gift baskets for raffles and food will be donated by local merchants, including Twinkle Toes and Village Bagels. Raffles prizes also include items such as tickets to The Late Show with David Letterman.

Everything’s Hair Salon is at 1258 Boston Post Road in Larchmont (next to Trader Joe’s). Reservations are not required, but they are helpful. Call (914) 833-9522 to reserve a seat.

For those who cannot attend, donations can be made to:

The JDM Fund for Mitochondrial Research

1333A North Ave. #611

New Rochelle, NY 10804

Maria Markey is Joey Mileti’s aunt.

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