Date: Sunday, March 13, 2016
Time: 2:30PM - 3:30PM
Place: SoulCycle - 8820 Washington Blvd, Culver City, CA
Liv's big brother and Dylan have been buds since age 3. Liv has Nemaline Myopathy, a rare disease affecting her skeletal muscles.
Please donate HOPE! We need MASSIVE support and attention to give kids like Liv a chance. Kids with NM, including Liv, generally cannot eat, breathe and walk on their own and depending on the severity, do not survive to see their first birthday. Liv has a moderate progressive case and inspires us every day with her determination to do what her classmates all take for granted. She is 4 years old and still cannot walk or crawl, and relies on a feeding tube for some of her nutrition. Like so many with NM, her speech is affected by severe muscle weakness in her mouth. She has a constant aide with her at school.
To give you just once example of how this disease is so terrifying, an everyday cold sends her family to the hospital and Liv fights for her life because her muscles are not strong enough to force mucus out of her lungs. Life expectancy is greatly reduced due to respiratory complications. Can you imagine? We all hear stories of devastating illness, but it can be easy to walk away when it’s not close to home. We can’t walk away and we are asking you as our community to please support this cause to give Liv and her family HOPE for a cure in her lifetime.
The only foundation that exists to raise money and support research for NM is A Foundation Building Strength www.buildingstrength.org. This is where your money will go to fund a gene therapy study for Nebulin based Nemaline Myopathy, targeting the same mutation Liv has. If this study is successful, Liv could have treatment in a few years. The organization is completely volunteer run and 100% of your money will go to this study. For more info on Liv and her family please visit www.loveliv.org. Thank you in advance for your support!
Share your link on Facebook and with all of your friends and family, or ask them to start their own team!
Registration is limited to 54 participants. Each participant must fundraise $500 or more to spin.
Instructions on How To Participate:
Click "Join the Event" or "Donate to a Fundraiser."