RESOURCES
It is the mission of The Olive Branch Fund: A Thisbe and Noah Scott Legacy to promote research, awareness, and support for families of all pediatric motor neuron diseases, including Brown- Vialetto-Van Laere.
www.bvvlinternational.org
Working closely with the Genetic Alliance, Laurian and John Scott founded BVVL International for families, physicians,
and researchers seeking information about Brown-Vialetto-Van Laere.
www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18416855
Published in April of 2008, this is the most comprehensive, up-to-date medical document published about BVVL.
www.geneticalliance.org
This is a coalition of advocacy organizations who provide a thorough database of rare diseases and genetic information,
as well as a wealth of information for families and researchers who wish to get involved in advocacy efforts on
the health policy front.
www.smafoundation.org
The SMA Foundation is an excellent resource on spinal muscular atrophy (SMA), one of the most common forms of
motor neuron diseases.
www.petitiontocuresma.com
Please take literally 30 seconds
to sign this petition to cure spinal muscular atrophy(SMA), a motor
neuron disease that is the #1 genetic killer of infants and toddlers
under the age of two. Target: United House Senate and United States
House of Representatives, sponsored by Bill and Victoria Strong,
whose daughter Gwendolyn has SMA type 1 (www.gwendolynstrong.com).
As of February 14, 2009, nearly 52,000 signatures have been collected.
They need 100,000; therefore, we need your help to move landmark
legislation through Congress that will allocate federal resources
to non-profit and research organizations focused on finding a treatment
and/or cure for SMA.
www.columbiamnc.org
The Motor Neuron Center at Columbia is one of the largest motor neuron disease "think tanks" in the world, bringing
together brilliant researchers all looking for the same thing: a cure for motor neuron diseases.
www.etspublishinghouse.com
Laurian and John Scott founded ETS Publishing, which is set to release Thisbe's Promise in the fall of 2008, a
children's book about a mother and daughter seeking hope and miracles in the midst of a profound illness.
www.childneurologyfoundation.org
Before the founding of The Olive Branch Fund in 2008, memorials given in honor of Thisbe and Noah Scott generated thousands of dollars in contributions to the Child Neurology Foundation (CNF). Thisbe is the poster child for their 2007 Annual Report, and Noah is the poster child for the 2008 Annual Report. The CNF is the outreach and philanthropic arm of the Child Neurology Society, providing information, educational opportunities, and advocacy for child neurologists and other medical professionals-and for patients, parents, and member groups dealing with an array of neurologic conditions.
CONTACT US
For more information on The Olive Branch Fund or to lend a hand to A Mighty Voice, please contact us at info@theolivebranchfund.org.
