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 are giving away 100 Zoo Membership Grants each year to families who have children with neurological disabilities.

Inquire about a Zoo Membership Grant

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
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, father
The M. Family
A diagnosis of GAMT deficiency at age 3 is bittersweet. We are clearly incredibly lucky that he was diagnosed as early as he was. Untreated this can be a degenerative disease resulting in seizures, severe intellectual disability and movement disorder. However, if treated from birth, development is normal. It has been hard to come to terms with the fact that Ryan essentially suffered three years of brain damage that could have been prevented, but with each new milestone these regrets seem to fade a bit more. I know I speak for our whole family when I say that we are so incredibly proud of Ryan and how much he's overcome!
Laura, mother
The C. Family
Because Gilbert has Creatine Transporter Deficiency, he experiences delays in most areas of life. We are grateful for the team we have created for him. Each and every one plays their part in the slow progression we see. Each milestone he reaches is filled with joy and then anticipation for the next milestone. We are grateful he hasn’t experienced any seizures. Even though life can be challenging, we are thankful for the little things- the growth we see, Gilbert’s love for life, and the compassion his sister has.
Rachel, mother
The C. Family
Once the results were in, we received the news that Logan had CTD (Creatine Transport Deficiency) - creatine is necessary for normal brain development and function and CTD creates a situation where creatine cannot enter the brain cells. Some days with Logan can be very challenging and unpredictable, while other days are more easy going. No matter what the day brings, we are blessed to have Logan in our lives.
Trina, mother
The D. Family
Carter gets ready for school each morning. He often needs extra time to get ready for school. Although he is always happy to go to school, he is not always the happiest about waking up at 6:45am. Carter has a full time aide that attends classes with him. He works on his I-Pad due to speech apraxia. One of Carter’s favorite things to do at school is to help with the coffee shop! While out on deliveries to the classrooms he often shows off a few dance moves as he leaves. Although Carter has many challenges he is an inspiration for all of those around him!
Amy, mother
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, mother
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, father
The B. Family
Fast forward almost 6 years and we couldn’t be prouder of Braden and all his hard work! The boy who we were told would never talk said his first words in kindergarten, and today speaks in full sentences. While we do still have many challenges that we don’t know if Braden will ever over come, we know without the diagnosis and treatment, he wouldn’t be where he is today. We can only hope that GAMT gets on every newborn panel screen in every state. I can just imagine how far Braden would be if he had been diagnosed and started treatment from birth.
Jennifer, mother
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, mother

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.

Want to help?

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.