Sites for information on Spinal Muscular Atrophy:
Support -- www.smasupport.com
This site has lots of good information on Spinal Muscular Atrophy.
of Spinal Muscular Atrophy -- www.fsma.org
Support group for Spinal Muscular Atrophy & lots of good
Dystrophy Association -- www.mdausa.org
Information on Spinal Muscular Atrophy
More information on Spinal Muscular Atrophy
Dr. John Bach - www.doctorbach.com This is the web site of the doctor who has taught us the non-evasive protocol we follow, Bipap, In/Ex-sufflator, Special Amino Acid/Low Protein Diet, etc..
SMA Foundation - www.smafoundation.org. Information on Spinal Muscular Atrophy, current research, public awareness and government pushes.
for information on financial & medical support:
& Advocacy, Inc. -- http://www.pai-ca.org/
PAI works in partnership with people with disabilities - to
protect, advocate for and advance their human, legal and service rights.
of Regional Center Agencies -- http://www.arcanet.org/
The mission of the Association of Regional Center Agencies is to
represent the autonomous regional centers in supporting and advancing the
intent and mandate of the Lanterman Developmental Disabilities Services
with Disabilities -- http://www.childrenwithdisabilities.ncjrs.org/
-- this site brings together
resources from all levels of government; information about advocacy,
education, employment, health, housing, recreation, technical assistance,
and transportation - covering a broad array of developmental, physical,
and emotional disabilities.
Care Financing Administration -- http://www.hcfa.gov/
-- Information on Medicare,
Medicaid, and managed care.
Security Administration -- http://www.ssa.gov/
-- Information on Supplemental
Security Income, disability and related benefits.
Dept. of Health and Human Services
www.dhhs.gov -- Catalog on Federal Domestic Assistance, publications on related
National Information Center for Children and Youth with Disabilities -- http://www.nichcy.org/
-- NICHCY is a national
information and referral center for disability-related issues, especially
those related to government initiatives.
for Drug Evaluation and Research
http://www.fda.gov/cder/ -- FDA
site; find out about all kinds of drug trials.