NEWS & EVENTS

It is the mission of the Thisbe and Noah Scott Foundation to promote research, awareness, and support for families of pediatric neuromuscular diseases in general and motor neuron diseases like Brown-Vialetto-Van Laere in specific.

A Mighty Voice 2008: The First Year

Jackson, Mississippi:

On June 13th, 2008, The Olive Branch Fund kicked off its very first A Mighty Voice fundraising event in Jackson, Mississippi. Despite the “hurricane-type” weather, nearly 400 people attended this dinner and silent art auction, raising over $110,000. Many thanks to our sponsors, artists, committee members, participants and venue hosts who not only made the event a success but also made it a beautiful evening.

Click on the images below to view all the event photos and corresponding media coverage.

Nashville, Tennessee:

On October 19th, 2008, Nashville, Tennessee, hosted the second A Mighty Voice event. With live music by Garrison Star, this family fun “Walk for a Cure,” featured Stu Grimson, a former Predators player, and Neil FedEx OfficeO’Donnell, former quarterback for the Titans, kicking off the walk with a fun “warm-up” geared toward the children. Approximately 300 people attended the walk at Centennial Park, raising nearly $60,000. Many thanks to our committee members, participants and sponsors, including FedEx, our Gold Sponsor.

Click on the images below to view all the event photos and corresponding media coverage.

   

Also on October 19th, the Nashville event’s “Angel Walkers” of Tunica, Mississippi, showed their support by walking from afar and raising over $1000.

Click on the image below to view the entire article of the Tunica Angel Walkers.

Phoenix, Arizona:

On November 2nd, 2008, Phoenix, Arizona, hosted the third and final A Mighty Voice event of the first year. Held at the Phoenix Zoo, this family fun “Walk for a Cure,” was kicked off with a “warm-up” by none other than the Phoenix Suns’ Gorilla. As the walk ensued, a video of Thisbe and Noah played at approximately the mid-way mark of the walk, at the Flamingo exhibit (Thisbe’s favorite spot). Many thanks to our sponsors, committee members and nearly 600 registered walkers for helping us to raise over $50,000 and for providing the perfect venue.

Click on the images below to view all the event photos and corresponding media coverage.

A Mighty Voice 2009: The Second Year

Memphis, Tennessee:

On May 2nd, 2009, Memphis, Tennessee, hosted the first A Mighty Voice event of 2009. Scheduled as a family fun “Walk for a Cure” at the Levitt Shell in Overton Park, the torrential rain may have abated musical entertainment and the walk but not the turnout. Many thanks to our sponsors, committee members and the nearly 250 people who braved the elements to raise approximately $30,000.

Click on the images below to view all the event photos and corresponding media coverage.

Richmond, Virginia

On Saturday, September 19th, 2009, Richmond, Virginia, hosted an event benefitting The Olive Branch Fund. In a neat little neighborhood venue called Lewis Ginter, a great ambiance lit the stage for Raizin Caine, a wonderful local band that played great renditions of 80s songs from The Cure, INXS and other classics to an audience of about 100. The A Mighty Voice banner with Thisbe and Noah’s pictures regaled the stage, and the event raised nearly $10,000. Many thanks to everyone who supported this new host city, including the Richmond committee, for making it a event-ful l evening.

To enlarge, click on the images below.

Nashville, TN

On Sunday, October 25th, 2009, Nashville, Tennessee, hosted its 2nd Annual "Family Fun Walk for a Cure.” Stu Grimson of the Predators kicked off the warm-up for the walk, which also featured live entertainment by Adam and the Couch Potatoes, as well as balloon animals, face painting and a nice family stroll through Centennial Park. Nearly 200 people showed up to support our cause, raising approximately $25,000. Many thanks to our sponsors, committee members and walkers for continuing to spread awareness and raising much-needed dollars for research.

Click on the images below to view all the event photos and corresponding media coverage.

A Mighty Voice 2010: The Third Year

Memphis, TN

On Saturday, April 17th, 2010, Memphis, Tennessee, hosted its 2nd Annual event as a “Saturday in the Park” at Levitt Shell in Overton Park. Featuring the talented singer/songwriter Amy LaVere, as well as a plethora of children’s entertainment, including a magic show and face painting, approximately 400 people attended, raising nearly $30,000. Many thanks to our sponsors, committee members, entertainers and everyone who came for making it a wonderful day.

Click on the images below to view all the event photos and corresponding media coverage.

Nashville, Tennessee

On Saturday, October 10, 2010, Nashville, Tennessee, hosted its third annual A Mighty Voice event. The first two years Nashville created a walk-for-a-cure type of fundraiser, but this year they changed things up a bit with an evening event, featuring live music by Grammy-winning songwriter Brett James and an extensive silent art auction featuring pieces donated by some of the region’s most celebrated artists. They coined the night, “Music and Masterpieces,” A Mighty Voice event. With approximately 250 people attending, the event raised nearly $60,000. Continued thanks goes out to our sponsors, committee members, entertainers, artists and attendees.

Phoenix, Arizona

FedEx OfficeOn Sunday, November 14, 2010, Phoenix, Arizona, hosted its second A Mighty Voice walk for a cure at the Phoenix  Zoo, home to Thisbe’s favorite pastime. With approximately 400 people in attendance, volunteers ushered walkers of ages ranging from 7 months to 70 years along a designated path through the zoo, with the turning FedEx Officepoint of the mile-long, sunny morning stroll at the flamingo exhibit, Thisbe’s beloved spot. If Noah had been older during his time in Phoenix, maybe it would have been his too? Or maybe the black bear exhibit with the path through the “jungle?”

The walk raised nearly $20,000. Thanks continue to go out to all who made this wonderful event possible: sponsors, committee members, entertainers, volunteers and walkers.

Thisbe and Noah Scott Outreach:

Finding a treatment - a cure - is what looms most on the minds of parents of children with neuromuscular diseases. As this is the primary funding aim of the Thisbe and Noah Scott Foundation, we also continue to help families in need. From advocating for a communication device and speech pathology for a boy with BVVL in the United States, to sending copies of Thisbe's Promise (www.thisbespromise.com) throughout the nation and abroad to children suffering from neuromuscular diseases and other illnesses. From arranging a meeting between an American neurologist and a Libyan family in Cairo to sending gifts to a beautiful little girl with SMA Type I, in the hopes of brightening her day. Every day brings the promise that we can make a difference in one child, one moment, one day, one disease, one world.

Research and Awareness:

  • In the spring of 2011, the Foundation’s first funding award was given to Kevin Eggan, Ph.D., Associate Professor of Stem Cell and Regenerative Biology at Harvard University.  The award will support 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 primary newspaper, The Tennessean, printed the Scott's story on the front page of the Sunday paper, proving that though it has been four and three years since Thisbe and Noah's deaths, their legacy continues to gain momentum. Those of us at the Thisbe and Noah Scott Foundation view it as the best published media to date. It weaves the story with new light as well as informs the reader from a scientific angle. Click below to read the article.

  • 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.

  • Noah and Thisbe’s cases were presented in a poster session at the 2009 Annual Meeting for the Child Neurology Society in October – yet another venue for promoting awareness for this disease at a national level. Visit http://www.childneurologysociety.org for more details.
  • In June 009, a team of pathologists from Vanderbilt and Harvard presented Noah2’s case at the annual meeting for the American Association of Neuropathologists, Inc., further aiding our endeavor to raise awareness for this lesser known counterpart of the motor neuron diseases.
  • The founding of BVVL International:

    BVVL International was created in June 2008 as the medical-minded arm of The Olive Branch Fund (now the Thisbe and Noah Scott Foundation). Through the BVVL International web site, at least twenty new families affected by BVVL have been discovered. We believe this is a highly under-reported number of cases and are working to expand awareness of the disease to give all families an opportunity to participate in BVVL research. In 2009, BVVL International set up a secure BioBank in order to assist investigators in their discovery of the gene(s) and potential therapeutics.  Through the BioBank,  DNA samples from affected individuals and their families are being collected and stored for the purpose of developing a cure. Also, with the help of the Genetic Alliance, the Scotts secured a researcher at the NIH (National Institutes of Health) for the sole purpose of isolating the BVVL gene. Once the first candidate BVVL gene was discovered, The Olive Branch Fund/ Thisbe and Noah Scott Foundation then began formulating a grant to Harvard University. This research will be ongoing through 2012 with potential to carry it further depending on the initial findings.

  • The Child Neurology Foundation made Thisbe and Noah their 2007 and 2008 poster children.

    Click on the images below to view the full version of the CNF posters.

CONTACT US

For more information on the Thisbe and Noah Scott Foundation or to lend a hand to A Mighty Voice, please contact us at info@thisbeandnoah.org.