Thanks to the Foundation that bears their names, if Thisbe and Noah had been born today, they would live healthy, active lives.
When Thisbe Scott first showed symptoms in 2005 of a then-titled diagnosis of Brown-Vialetto-Van Laere syndrome, the syndrome was so rare that her mother Laurian had to dig into the internet equivalent of dusty old Encyclopedia Browns, to trace a couple dozen documented cases worldwide, from the past 100 years. Doctors far and wide told her parents there was nothing that could be done. At UCLA they were told more directly: “Take her home and love her because she’s going to die.”
Today, it’s much brighter than it was then, thanks to Thisbe & Noah’s invaluable contributions to science genetically, financially and philanthropically. The gene for their BVVL syndrome mutation has been identified, renamed RTD syndrome, and a respective therapeutic discovered – along with dozens, if not hundreds of other RTD families worldwide who would benefit from it.
Simultaneously, Thisbe & Noah has enriched the landscape for countless children with similar neurological diseases and/or disabilities. From multidisciplinary disease research to outreach grants and projects like Promise Park, Thisbe & Noah leads by example. Because EVERY child deserves a world that loves them back.
Thisbe & Noah’s Promise Park, located at the the Nashville Zoo, is an all-inclusive, custom-designed playground, built for children with and without disabilities to promote empathy, inclusion and side-by-side play.
Let’s ALL Play!
To learn more about how to support or visit Promise Park, please visit our dedicated Promise Park website.
Zoo Membership Grants
To ensure that even more children can enjoy the all-inclusive play at Promise Park, we give away 100 Zoo Membership Grants each year to families who have children with neurological disabilities. The Zoo Membership Grant application for 2024 is now open. Please click HERE to complete an application. You will receive a response by February 15th letting you know if you did or did not receive a grant. We receive hundreds of applications and unfortunately are unable to provide grants to every applicant.
Zoo Membership Grant Application
Other Grants & Support:
Thisbe & Noah has provided grants to other organizations within our mission, such as BDSRA (Batten Disease Support and Research Association) to further aid in their research for a cure and the Gwendolyn Strong Foundation for their novel iPad program. It is part of our goal to ensure that other rare diseases such as these are recognized and that we are part of the change.
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of people affected by rare diseases are children
of all rare diseases do not have a single FDA approved drug treatment
years: average time it takes to get an accurate rare diagnosis
BVVL, now called RTD, or Riboflavin Transporter Deficiency, took Thisbe and Noah from this world far too soon. From heartbreak came determination that they would not die in vain, but that their parents would do for others what they so desperately wished someone had done for them: save their children.
BVVL International was created in June 2008, by Thisbe and Noah’s parents, Laurian and John Scott, as the medical-minded arm of the Thisbe & Noah. BVVL International was the hub for information and the only one of its kind for the first 10 years. Through the BVVL International web site, numerous new families affected by BVVL were discovered. To strengthen this, a bio bank was created in order to collect samples and facilitate research, eventually leading to the first discovery of a BVVL mutation – and ultimately, a successful treatment.
Once the first candidate BVVL gene was discovered, Thisbe & Noah began formulating a grant into the mechanics of BVVL. In March of 2011, Thisbe & Noah awarded the first research grant of its type to Kevin Eggan, Ph.D., an esteemed and leading researcher in motor neuron diseases and Associate Professor of Stem Cell and Regenerative Biology at Harvard University.
Read Dr. Kevin Eggan’s groundbreaking research in Human Molecular Genetics, 2016. Click here to see the full article.
Read the full article about Laurian and John Scott, a.k.a. the “Gene Warriors,” and their efforts to find a cure for BVVL. Click here to read the full article.
Community & Outreach
Thisbe & Noah’s “A Mighty Voice,” is a fundraiser that partners with other child-focused nonprofits in and around Nashville to bring a voice to those children and their families who are most in need of being heard.
Piggy Promises: We have seen first-hand how our community’s children want to get involved. Piggy Promises is an easy way to empower children to raise money and support children with disabilities. Children have taken action through lemonade stands, bake sales, sports clinics, and so many other creative ways in order to raise money and spread awareness..
Thisbe’s Promise: Laurian Scott wrote a children’s book for Thisbe when she was sick. It tells the story of a mother who shows her sick little girl the world of promise that awaits outside her bedroom window. It is a book full of hope, discovery and beautiful illustrations, and it now stands as Laurian’s testament to both Thisbe and to Noah that a mother’s love is always living, thriving, seeding and re-seeding – that it is ultimately woven into who we are – the poem of life that is LOVE.
Thisbe & Noah has given away hundreds of copies and will be giving away thousands more at Thisbe’s Free Little Library, located at Promise Park.