BVVL International was created in June 2008, and is the first web-based resource tool for physicians, researchers, and families interested in learning more about Brown-Vialetto-Van Laere syndrome.  Brown-Vialetto-Van Laere syndrome (BVVL), sometimes referred to as “bulbar palsy,” is a rare, neurodegenerative motor neuron disorder, mainly affecting children.  The disease causes a host of cranial nerve deficits including loss of the ability to speak, hear, swallow, and even breathe.

 
BVVL International is a resource for anyone interested in learning more about the disease and includes the following:
 

• Summary information from case reports of individuals with BVVL in the medical literature
• A disease registry so that families and researchers can work together towards finding the cause and a cure
• Current research underway towards finding the genetic mechanism responsible for the disease
• A way to connect with others involved in similar research so that they can share ideas and hasten their progress towards curing pediatric motor neuron diseases
• How to get involved in advocacy efforts to increase research and funding for BVVL and other rare genetic diseases
• Opportunities to contribute monetarily to ongoing research on BVVL

BVVL International is a project of The Olive Branch Fund: A Thisbe and Noah Scott Legacy. Both were created in 2008 by John and Laurian Scott, who lost their two children, Thisbe and Noah, to this devastating disease. The Scotts have worked with researchers across the world to find the gene that causes BVVL in the hopes to find a cure, so that no child or family will ever suffer the way that they have, and continue to, every single day.