Worthy Cause
The following is a worthy fundraiser taking place in Nashville, Tennessee, on October 25, 2009. We thought you might be interested in their story whether local to Nashville or not.
Laurian and John Scott, lost their two children, Thisbe and Noah, to a rare pediatric motor neuron disease. Now in their memories, friends and family will host a walk at Centennial Park in Nashville to celebrate their lives and to raise awareness about this devastating disease. The following is part of their story and more info about the fundraiser.
On Sunday, October 25th, 2009, at 3:00 p.m., The Olive Branch Fund: A Thisbe and Noah Scott Legacy, started by Franklin residents, John and Laurian Scott, will be hosting “A Mighty Voice,” a multi-city fundraiser to raise awareness and fund research for pediatric motor neuron diseases (MNDs) at Centennial Park.
The Olive Branch Fund was founded in honor of the Scott’s two children, Elenna “Thisbe” and Noah Scott, who were both lost to Brown-Vialetto-Van Laere (BVVL), a rare form of MND. Their daughter Thisbe was perfectly healthy the first 16 months of her life, yet gravely ill the last 17 months and passed away on April 30, 2007. One month later, their son Noah, 10-months-old at the time, also began showing symptoms of the same disease. Nine months later, on April 9, 2008, he also passed away. It has since been their mission to raise awareness of these diseases, help fund research to find a cure and be a support system for all families of pediatric MNDs.
“As the second annual A Mighty Voice event in our hometown, we look forward to strengthening the awareness, momentum, and research dollars for these diseases while also making it a wonderful event for families,” said Laurian Scott. “It’s amazing how many people are carrying the genetic mutation for a MND and have no idea – the number has been estimated at approximately 1 in 35 to 40 people. SMA, the most common pediatric MND, is the number one genetic killer of infants and toddlers. Since my daughter’s ‘diagnosis’ in 2006, we have radically changed the face of BVVL, and multiple families here and abroad, even as far away as Libya, have reached out to us for help. We’re the only ones on the planet advocating for this disease while also vying for a universal treatment for all MNDs.”
This family-friendly fundraiser will include a walk through Centennial Park with live entertainment by the popular children’s band, Adam and the Couch Potatoes, face-painting, and a book signing of Thisbe’s Promise, a children’s picture book written by Laurian Scott. Through this, and other fundraisers throughout the nation, the Scott family hopes to create “A Mighty Voice” for all children affected by motor neuron diseases.
The Olive Branch Fund is a component fund of The Community Foundation of Middle Tennessee, a 501 (c) (3). For more information visit www.amightyvoice.org or www.cfmt.org.
Please let us know if you go to this fundraiser on Sunday!
