WHO: The family of Liv Shimanovsky, a two-year-old local girl diagnosed with Nemaline Myopathy (NM), a rare disorder that primarily affects skeletal muscles, which are muscles that the body uses for movement. There is currently no treatment for NM.
WHAT: LoveLiv, a benefit to generate funds for NM research and awareness of the disease. Activities include:
- Silent auction (11:00 a.m. to 1:00 p.m.)
- Live music by Los Pinguos
- Food and beverages by Camacho’s Cantina Universal City Walk, Factors Famous Deli, John O’Groats, LaRocco’s Pizzeria, Sugar Dayne Cookies, Stout Burgers & Beer
- Tours of the Eco Station
- Bouncers, Arts & Crafts, Face Painting
WHEN: Sunday, May 18, 2014 from 11:00 a.m. to 2:00 p.m.
WHERE: Star Eco Station, 10101 Jefferson Blvd., Culver City, CA 90232
What is NM?
Nemaline myopathy (NM) is a group of congenital, hereditary neuromuscular disorders that cause muscle weakness, generally nonprogressive, of varying severity where severe forms show up to 66% mortality rates before the age of two. It is considered one of the most severe muscle conditions of childhood. Currently no treatments or disease modifying therapies exist for nemaline myopathy and few potential candidate drugs have been identified.
“Myopathy” means “muscle disease”, and a biopsy of muscle from a person with nemaline myopathy shows abnormal thread–like rods, called nemaline bodies, in the muscle cells. People with nemaline myopathy (or NM) usually experience delayed motor development and weakness in the arm, leg, trunk, throat, and face muscles.
The disorder is often clinically categorized into several groups, including mild (typical), intermediate, severe, and adult–onset; however, these distinctions are somewhat ambiguous, as the categories frequently overlap. Respiratory problems are a primary concern for people with all forms of NM, and though in some severe cases they may threaten life expectancy, aggressive and proactive care allows most individuals to survive and lead active lives.
FOR MORE INFO: http://www.loveliv.org
GET TICKETS: https://secure.giftogo.com/e/loveliv-2014/register
*No monetary compensation was provided for this post. Heather is invited to attend this event.