Culver City Fundraiser for Nemaline Myopathy Research

LoveLiv, an event planned by a local LA family to generate awareness for their one-year-old daughter’s condition, Nemaline Myopathy, will take place at the STAR Eco Station in Culver City on Sun. May 19 from 11 a.m. – 2 p.m.

NM is a disorder that primarily affects skeletal muscles. Affected individuals may have feeding and swallowing difficulties, foot deformities, scoliosis and joint deformities. Many sufferers eventually require wheelchair assistance. There is currently no treatment, and research is scarce given the rarity of the disease.

The May 19 event is the brainchild of the Shimanovsky family, whose daughter Liv  (hence the event name – LoveLiv), suffers from the disease.

“To us, LoveLiv means hope,” said Sharon Shimanovsky, Liv’s mother. “That’s why we are organizing this event. It’s a labor of love and hope. We believe that a better future for Liv is only possible with research and treatments that can make her stronger and her life easier.”

Stout Burgers and Beer will be pouring their artisanal beer alongside several of their “new-style burgers” and tasty sides at the vent. Also on the menu is Factor’s Famous Deli’s legendary macaroni and cheese and Debbie’s veggie chopped salad. Plus, SugarDayne will be offering cookies for dessert.

American Idol season 7 top 5 contestant Brooke White will perform 70s-inspired gold-spun soul tunes with her band. Celebrities including Hank Azaria and Jessica Capshaw will make appearances throughout the event. For little ones, there will be face painting from “Guiding Light” star Emme Rylan and Dayna Mondello as well as the chance to enjoy bouncies and arts and crafts.

The whole family will have the opportunity to embark on guided tours of the Eco Station and meet several of the exotic rescued animals from tortoises to parrots.

There will also be a silent auction. Bidding items will include a Sethi Couture necklace and a 14-carat diamond heart necklace (valued at more than $5,000). Vacations to Cancun, Mexico (any Grand Mayan property) and around the world (a stay at any RCI property worldwide) will also be offered alongside tickets to “Jimmy Kimmel Live” with green room access and much more. All proceeds will go to A Foundation Building Strength for Nemaline Myopathy.

For more information on the event, please contact Suzie Cornell at suzie@scornellpr.com. To learn more about NM visit www.buildingstrength.org

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