Whether you want to learn more about the benefits of SMA carrier testing, have just found out that you and your partner are carriers, or are expecting or have a child with SMA, there are many resources available to help you.
One resource is this website, which was created to raise awareness of SMA and provide help to couples seeking reliable information, support, and access to a community of others affected by or focused on SMA.
Other helpful resources include:
National Society of Genetic Counselors
The National Society of Genetic Counselors promotes the genetic counselor profession as a recognized part of health care delivery, education, research, and public policy.
American College of Medical Genetics
The American College of Medical Genetics provides education, resources, and a voice for the medical genetics profession. To make genetic services available to and improve the health of the public, the ACMG promotes the development and implementation of methods to diagnose, treat, and prevent genetic diseases.
American College of Obstetricians and Gynecologists
The American College of Obstetricians and Gynecologists is the nation's leading group of professionals providing health care for women. The ACOG's main work is in four areas: serving as a strong advocate for quality health care for women, maintaining the highest standards of clinical practice and continuing education for its members, promoting patient education, and increasing awareness of the changing issues facing women's health care.
Muscular Dystrophy Association
The Muscular Dystrophy Association is a nonprofit health agency dedicated to curing muscular dystrophy, ALS, and related diseases, including SMA, by funding worldwide research. MDA also provides comprehensive health care and support services, advocacy, and education. MDA supports more research on neuromuscular diseases than any other private-sector organization in the world.
FightSMA is an international nonprofit organization dedicated to finding a treatment or cure for SMA by raising awareness of and funding for SMA research.
Families of SMA
Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure for SMA by funding and advancing a comprehensive research program; supporting SMA families through networking, information, and services; improving care for all SMA patients; educating health professionals and the public about SMA; enlisting government support for SMA; and embracing all touched by SMA in a caring community.
Claire Altman Heine Foundation
The Claire Altman Heine Foundation uses its funding to identify carriers of SMA, support population-based SMA carrier screening, raise awareness of SMA, and educate the public and medical communities about SMA.
The SMA Foundation is committed to developing private sector involvement in SMA drug development by fostering alliances among academia, government, and pharmaceutical and biotechnology companies; increasing government funding and support through targeted efforts to increase awareness in Congress and the National Institutes of Health; and raising awareness of SMA among government leaders, members of the pharmaceutical and biotechnology industries, and the public.