TNSF works in many ways to support families affected by pediatric neuromuscular diseases. If you suspect that your patient or loved one might have BVVL and you are interested in genetic testing, please contact Lindsay Ballew at to inquire about possible funding for this testing.

We have found that an important piece of support is connecting families. Families affected by neuromuscular diseases often feel isolated. We have a wonderful group of families that connect via a facebook page. If you would like to be connected to this group, please email Lindsay Ballew.

Also available is a special children’s book written by Laurian Scott, mother to Thisbe and Noah, and illustrated by Kelley Sharp. The book, Thisbe’s Promise, is available to hospitals and children suffering from pediatric neuromuscular diseases. Please contact Lindsay Ballew with any requests.