Our Impact

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 within our mission 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 2023 is now closed. We will re-open the application for this grant in January of 2024. Please check back then. 

Inquire about a Zoo Membership Grant
CONTACT US

Family Conference Grants

Thisbe & Noah knows first-hand just how invaluable family conferences are. They are numerous, typically held annually throughout the country and are disease-specific. These conferences offer new and valuable information that can energize families, doctors, and researchers with a better understanding of the disease and can result in enhanced clinical care, new research avenues or even successful therapies. Often, families are able to contribute their DNA at these conferences in order to further the research that can help save their children. There is nothing more empowering than that.

This is why, each year, Thisbe & Noah raises funds to provide travel grants so that well-deserving families can activate hope and be a part of the change.

Inquire about a Family Conference Grant
CONTACT US
The S. Family
Henry is one sweet 4 year old. He was diagnosed at 2 1/2 with SCN2A related Autism Spectrum Disorder, ADHD and Global Developmental Delay. He is currently non-verbal, though working very hard to communicate with his family, friends and teachers in his own special way. Henry is fairly easy to please, but it is becoming harder and harder to witness his struggles: communication, safety awareness, frustrations and aches and pains that he can't express with words. He is a fairly content little boy who loves music, sweet treats, bubbles, jumping on the bed and hot tub time.
Amanda, mom
The S. Family
Zagyn is 5 years old and in kindergarten. Our typical day with our son is never fully the same and he definitely keeps us on our toes but he always seems to have a smile on his face.  Zagyn has had feeding issues since birth and we also noticed physical and speech delays along with ear deformities early on. After much searching, Zagyn was diagnosed with Champ1 mutation. Zagyn has many issues and challenges but he always pushes threw like a real fighter and champion.
Victoria, mom
The O. Family
LJ is 5 years old and began showing signs of developmental delay around 10 months of age. Since that time our family has embarked on a journey to help LJ become the best he can be, discovering his SCN2A diagnosis along the way. A typical day for us includes lots of therapy. He attends a special needs preschool in the morning and receives daily related services for speech, OT, PT, and ABA in the afternoon. His SCN2A gene is a loss of function causing autism, global developmental delay, feeding difficulty, GERD, and hypotonia. Through it all LJ amazes us with his resiliance and joy for life. He is wise and his musical soul memorizes melodies introduced to him.
Victoria, mom
The T. Family
Natalia is a happy, energetic, friendly little girl. She enjoys music, baseball, and playing with her brothers and sister. When she was 3 weeks old she contracted HSV encephalitis, which caused severe damage to her brain. She suffers from several different forms of epilepsy and was recently diagnosed with Lennox-Gastaut Syndrome. Finding medications that work well to control her seizures with little side effects has been difficult. We are so grateful to meet other families who care for a child with LGS and can relate to our struggles. We are also eager to learn more about LGS and ways that we can help Natalia throughout the rest of her life.
Kimberly, mom
The P. Family
After 18 months and several incorrect assumptions and tests, we learned Hazel has Leukoencephalopathy with Brain Stem and Spinal Cord involvement and Elevated Lactate (LBSL). We learned there is no cure for this progressive disease that affects Hazel's ability to coordinate movements. A cure for Hazel would mean she could carry her own cereal bowl to the sink, drink out of any cup a person gives her, and never has to plan if there is a wall or person willing to offer support as she walks. These were tasks Hazel could complete independently a few years ago. Though her body is losing abilities, it does not keep her down, she loves to dance and continues to take the stage!
Kasey, mom
The V. Family
Elijah, Simon, and Ezra are in many ways a typical set of rambunctious brothers. When left to their own devices, they will quickly begin to push, pull, climb, and generally pick on each other until one has had enough and decides it is time to tell mom and dad.  The difference with these three boys is that, amongst a few other things, they can’t exactly communicate with words.  To be clearer, of the three boys who range in age from three to ten, none of them has yet to utter a single word.  This lack of words, and any other structured communication, does not mean that they don’t express their feelings.  All three boys have a wide variety of looks, motions, and sounds that they have developed to "talk" to both us as their parents, and each other as uniquely similar siblings.
Nathan, dad
The L. Family
Because of the length of time she lived with untreated GAMT, she has sustained some permanent brain damage. But she is rapidly gaining new skills now that her actual diagnosis is being treated properly. Her doctors and therapists are amazed at how quickly she has progressed. We are excited to be able to attend the first ever symposium focusing on Cerebral Creatine Deficiency Syndromes. We hope to be able to learn more about how to help our daughter continue to thrive. Thank you Thisbe & Noah Scott Foundation for making this a possibility for our family.
Randi, mom
The D. Family
We know that Shepard may have years of appointments, therapies and other challenges but we are committed to helping him find success and move any mountains in front of him. He is a joy and a very special boy. Thank you so much for helping us attend the GAND family conference, this will be an invaluable opportunity for us to connect and learn from other families.
Seth, dad
The F. Family
Jack and Hunter are currently cared for in our home where they are seen by 6 different therapists. They receive PT, OT, Special Instruction, Behavioral and 2 types of Speech Therapy. Our boys have a passion for learning and get so excited for each of their therapy sessions. They also enjoy socializing with other children at the library, music class and the parks. Jack and Hunter look up to their big sister, Paige, who loves to participate in their therapy sessions and help them learn. We are so proud of their accomplishments and each milestone they reach.
Kristy, mom

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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Research

50%

of people affected by rare diseases are children

95%

of all rare diseases do not have a single FDA approved drug treatment

6-8

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.