After four years of funding research with Kevin Eggan, Ph.D., Associate Professor of Stem Cell and Regenerative Biology at Harvard University, we are proud to announce that our groundbreaking discoveries have been documented in a recently published article in Human Molecular Genetics. We are also well into research that promises a second article to come. We look forward to our continued work with this amazing Harvard team.
Beverly Hills, CA: The Child Neurology Foundation presents the Heroes of Promise Award to Laurian and John Scott.
To celebrate the Heroes that care for children afflicted with neurologic disease, the CNF hosted A Heroes Dinner on Saturday, November 8, 2014 at The Four Seasons – Beverly Hills. This evening reception announced the establishment of the John & Laurian Scott – Heroes of Promise Award. It is an award that begs us to not only honor the promise they made to their late children, but to also make one to ourselves. A promise to show up when the unthinkable happens. A promise to be the Hero that lingers within. A promise to say never again. After all, our children deserve to see Heroes every day. – from the Child Neurology Foundation’s A Heroes Dinner pre-sale mailing.
TNSF teamed up with The Gwendolyn Strong Foundation (thegsf.org) to help bring ipads to children with neuromuscular diseases who were in desperate need of communication devices. Through an application process, 100 ipads were granted in 50 weeks to children needing a way to communicate with loved ones and friends. Each ipad contained the communication app, “Say Hi AAC”, built specifically for those with limited movement.
Kevin Eggan, Ph.D., Associate Professor of Stem Cell and Regenerative Biology at Harvard University, received the Foundation’s first grant. The award supports Dr. Eggan’s ongoing research into the neuromuscular system while also providing clues into the mechanisms of Brown-Vialetto-Van Laere syndrome (BVVL). This research is the first of its type into the investigation of BVVL. Dr. Eggan is a leading researcher in motor neuron disease. He received the MacArthur Fellowship in 2006 and received the Presidential Early Career Award for Science and Engineering from President George Bush in 2008.
On July 31st, 2011, Nashville’s newspaper, The Tennessean, printed the Scott’s story on the front page of the Sunday paper. Click below to read the article.
The Olive Branch Fund: A Thisbe and Noah Scott Legacy breaks away from The Community Foundation of Middle TN to become its own 501(c)3, The Thisbe and Noah Scott Foundation, Inc. The mission was broadened to include not only motor neuron diseases but all neuromuscular diseases.
On March 4, 2010, history was made for BVVL and motor neuron diseases alike with the discovery of the first candidate BVVL gene, identified as C20orf54, published in the American Academy of Human Genetics journal. The Scott’s DNA contributed to the finding of this gene, along with at least 10 other participating families. Visit http://www.bvvlinternational.org/BVVL_Research_Highlights.html for more information.
As a global push to raise awareness for BVVL, Thisbe and Noah’s cases were presented at a poster session at the International Child Neurology Congress in Cairo, Egypt, in the spring of 2010. John and Laurian Scott were in attendance at this conference on behalf of BVVL International to distribute informational materials and be available to answer questions alongside the presenting physicians, both of whom serve on the BVVL International Advisory Board: Dr. John Bodensteiner of the U.S. and Dr. Fathi Dakhil of Libya. Visit http://www.icnc2010.com for more details.