Helpful Links

 

Sites for information on Spinal Muscular Atrophy:

 

SMA Support -- www.smasupport.com  This site has lots of good information on Spinal Muscular Atrophy.         

 

Families of Spinal Muscular Atrophy -- www.fsma.org  Support group for Spinal Muscular Atrophy & lots of good information.

 

Muscular Dystrophy Association -- www.mdausa.org  Information on Spinal Muscular Atrophy        

Spinal Muscular Atrophy www.familyvillage.wisc.edu/lib_spma.htm  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.

 

 

 

                                   

Sites for information on financial & medical support:

 

Protection & 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.

 

Association 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 Act.

 

Children 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.

 

Health Care Financing Administration -- http://www.hcfa.gov/  -- Information on Medicare, Medicaid, and managed care.

 

Social Security Administration -- http://www.ssa.gov/  -- Information on Supplemental Security Income, disability and related benefits. 

 

U.S. Dept. of Health and Human Services -- www.dhhs.gov -- Catalog on Federal Domestic Assistance, publications on related disability subjects.

 

The 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. 

 

Center for Drug Evaluation and Research -- http://www.fda.gov/cder/ -- FDA site; find out about all kinds of drug trials.