Connect with other BVVL and Fazio-Londe families:
SMASpace is an online connection tool with a BVVL Group. Go to www.smaspace.com, become a member, and click on "Groups." If the "BVVL/Fazio Londe" Group doesn't show up immediately, then click on "Show All." Join that group, and begin a discussion with another parent going through something similar. Or, become friends with other SMA families, as everyone on this site is looking to connect with other people whose children are suffering through motor neuron diseases.
www.smaspace.com
Other Resources:
Genetic Alliance provides a comprehensive rare disease database and list of relevant associations/organizations for patients and their families, as well as advocacy tools to promote research for genetic diseases.
www.geneticalliance.org
The Motor Neuron Center is the first initiative of the Columbia University Center for Neurosciences Initiative (CNI) in New York, dedicated to bringing researchers together to find the mechanisms responsible for pediatric and adult motor neuron diseases.
www.columbiamnc.org
The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) provides information about rare diseases to health care professionals, patients and families, and helps to coordinate research.
http://rarediseases.info.nih.gov/
The Genetic and Rare Diseases Information Center (GARD) provides information for the general public, including patients and their families, health care professionals and biomedical researchers. It was established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD).
www.genome.gov/10000409
The Olive Branch Fund shares the personal story of the Scott family, who lost two children to Brown-Vialetto-Van Laere, and their ongoing search for a cure.
www.theolivebranchfund.org
The Scott family founded ETS Publishing, which is scheduled to launch its first children’s picture book,
Thisbe’s Promise, in the fall of 2008, to honor their daughter, Thisbe, as well as to provide a resource for parents and children struggling for hope and promise in the midst of a profound illness.
www.etspublishinghouse.com