Sona is a seven-year-old NSW graduate who lives in Manhattan Beach. In 2013, the summer after her NSW graduation, she was diagnosed with FOP (fibrodysplasia ossificans progressiva). FOP is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are only 800 known cases worldwide and there is no treatment; yet, the genetic cause of the disease has been found and there are many promising lines of research.
Sona is a bright, happy and active young girl who enjoys kindergarten, dancing with her younger brother, going on playdates and telling knock-knock jokes. She loves to read, draw, and perform messy science experiments in her backyard. Although FOP has started to limit Sona's mobility, she perseveres with inspiring grace, and there is much hope that effective treatments or even a cure can be found before she is severely disabled.
Sona's family has set up a Competitive Research Grant to award funding to researchers who are focused on discovering treatments for FOP. 100% of contributions to the grant will go towards research for FOP. Please donate so that Sona can continue to climb, run, jump and swim.
Thank you so much to the NSW community for having the Trike-A-Thon in honor of Sona. Words cannot express the gratitute in our hearts.
xoxo, Aarti, Kyle, Sona and Taj.
To donate: http://www.hopeforsona.org/new-school-west
Select the Campaign: "NSW Trike-A-Thon for Competitive Research Grant for Sona" from the dropdown menu.
All deductions are 100% tax deductible.