Here are a
few web sites you may find helpful:
dedicated to providing
information and support to family, friends, individuals and caregivers on
all aspects regarding the devastating genetic disease called Spinal Muscular
Families of SMA
- Families of SMA was founded in 1984 for the purpose of raising funds to
promote research to find a cure for Spinal Muscular Atrophy, and to support
families affected by SMA.
WNY Chapter FSMA
- Fight SMA
is an international nonprofit organization dedicated to finding a treatment
or cure for spinal muscular atrophy (SMA), the leading inherited killer of
children under two.
Dr. Kathryn Swoboda
Assistant professor, Neurology and Adjunct Assistant Professor, Pediatrics
(Medical Genetics) at the University of Utah School of Medicine. She is a
neurologist and geneticist with expertise in the diagnosis and management of
children with neuromuscular disorders. Dr. Swoboda is a member of FSMA's
Scientific Advisory Board.
Dr. John Bach
– Professor of Physical Medicine and Rehabilitation including: Research
in Research in Physical Medicine and Rehabilitation and
sole purpose is to provide love and blanket hugs to SMA children and their
families. B4SMA was founded in March 2004 by MJ Purk and Brenda Hanson.
Kyle and Friends
- Kyle and Friends is dedicated to spreading awareness about Spinal Muscular
Atrophy, giving newly diagnosed families the most up to date information,
and raising money for a cure.
SMASpace is a social networking site for families, caregivers, and
organizations battling SMA. SMASpace is still in its infancy, but will be
made public soon. Contact our SMASpace team if you'd like to become a beta
- Addy’s Adaptations for SMA, Inc. is a non-profit organization that was
started to provide additional avenues of help and hope for families who are
dealing with the disease Spinal Muscular Atrophy (SMA).
The Independence Foundation
- dedicated to providing support and assistance to individuals with
physical disabilities so that they may live independent, self-directed
The Parent Network of WNY
- parent-led community resource for parents of children with special
needs and professionals working with individuals with disabilities.
Neighborhood Legal Services
- Neighborhood Legal Services, Inc. (NLS) is a not-for-profit agency
located in Buffalo, New York. NLS provides free legal services to persons
with low-income and persons with disabilities. It also provides a wide range
of technical assistance and support services.