Kurichan Support Committee

Pakele Live! Shiozawa family charity event

Benefit for a Family Stricken with Spinocerebellar Ataxia

On Thursday, July 9, 2009, Pakele Live! will host a very special charity event at the Pakele Lounge in the Lobby of the Ala Moana Hotel for the Shiozawa's, a special family in need.

Local musicians and entertainers including Kumu Hula Leialoha Lim-Amina, Herb Ohta Jr., Walt Keale, John Yamasato, Jennifer Perri, Brad Kawakami, Ken Lykes, and others will perform. There will also be a Koaloha Ukulele auction that will benefit the Shiozawa family.

Admission is free. Donations for the family will be accepted. It will also be televised on the Pakele Live! TV series on Oceanic Cable Channel 16 (check OC 16's schedule for time and day). The show starts at 6:00 p.m.. Enjoy great music and help the Shiozawa family meet the challenges they face with everyday life.

The Shiozawa family is affected by a progressively neurodegenerative genetic disorder called Spinocerebellar Ataxia or SCA. Basically, this disease affects the spinal cord and the cerebellum, the area of the brain that controls voluntary motor movement, balance, and muscle tone. Slowly, the patient loses the ability to control their own movements, including speaking, eating, swallowing, walking, and hand/arm movements. The disease has many varieties or types based on the specific gene that is affected. Therefore, the severity and onset age of the disease varies considerably from person to person. Currently, SCA has no known cure.

Chiaki and Junko Shiozawa decided to move permanently to Hawaii when they noticed their then-5-year-old daughter, Kuri, was healthier whenever they vacationed here. Kuri suffered from severe asthma and the clean air seemed to help her to breath easier. Junko, who was a TV reporter and journalist in Japan, found work as a writer for a local paper and Chiaki, a TV producer in Japan, established Hawaii

Web TV, a video production business.

Chiaki began to experience suspicious symptoms and in 2008 everything unraveled for the family when they received the devastating news that Chiaki suffered from

DRPLA a severe type of SCA. Unlike most types of SCA, DRPLA affects not only the patient's motor skills, but also personality, ability to control emotions, and general thinking process. It was then discovered that Kuri's constant health challenges were also due to DRPLA. DRPLA is a devastating disease as the onset age becomes

earlier and more severe with each generation it is passed on.

It fell upon Junko to care for both Chiaki, who can no longer hold a camera to work and Kuri, who is now having difficulty eating, bathing, and sleeping, all the while running the business – their only source of income. Junko had been trying her best to do it all on her own this past year, keeping her family's plight to herself. A few friends, who knew nothing of her struggles until recently, are now helping Junko to manage her family and business but, she needs more help.

The goal of this charity concert is to assist the family monetarily as the family's medical expenses are immense and everyday living is difficult without outside help. The public is invited to come and enjoy great music and help support Kuri, her dad, and her mom.

In addition to local musicians donating their talent and time, Pali Ka'aihue of the Hoku Award-winning local band PALI and the show's host, Tony Solis will donate the funds to produce and film this charity event. Hawaiian Moon is also donating the matching outfits that the Shiozawa family will wear to the event.

Pakele Live! which showcases Hawai'i's music, dance and culture, happens every Thursday evening from 6:00pm to 9pm at the Pakele Lounge, in the lobby of the Ala Moana Hotel, and it goes streaming live on the web. You can also watch Pakele Live! on Oceanic Cable's Channel 16 everyday, except Mondays and Fridays.

Thursday, June 25, 2009 Honolulu Advertiser