Spinal Muscular Atrophy Support Groups and Organizations for People with Disabilities their families and caregivers: New Horizons Un-Limited

Spinal Muscular Atrophy Support Groups and Organizations

New Horizons Un-limited is not endorsing and assumes no responsibility in guaranteeing the products, services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Evaluate the information, analyze your unique circumstances, use your best judgment and make your own decisions when using the information. Before making any change, consult your health care professional.

National
State Listings: GA / MA / MI (Official USPS State Abbreviations)
Country Listings: Australia / Canada / United Kingdom

National

EveryLife Foundation for Rare Diseases The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases. Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. The science exists for many of these diseases to be treated; however, treatments may never be developed because of roadblocks in the development process, such as a lack of investment and a challenging regulatory environment. The Foundation works with patient organizations, Industry, Academic Scientists, the Food and Drug Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process through our Rare Disease Workshop Series, Rare Disease Legislative Advocates (RDLA) events, and legislation.

Families of Spinal Muscular Atrophy (FSMA) is a national organization that offers a wide variety of information, services, and support to families caring for someone with Spinal Muscular Atrophy. They hope to provide you with information that will help you navigate through life with SMA. They can help connect you with other families and provide resources to assist in the care of a family member with SMA. They also work to fund the research and treatments in development for this disease. Though they are a national organization, you can find a local chapter by visiting their Chapter Directory. For more information you can contact FSMA by Phone: (800) 886-1762 (Toll Free - US and Canada only) (847) 367-7620 (all other locations) or Email: info@fsma.org

Never Give Up, all volunteer non-profit, advancing science, advocating for policy, equipping families, and raising awareness, known legally as "Gwendolyn Strong Foundation," works to bring higher levels of awareness and understanding of Spinal Muscular Atrophy (SMA), and to strategically accelerate the search for a treatment and cure. FightSMA works intimately with leading SMA scientists from around the world, helping to articulate and support a focused research strategy. Their website has wonderful information about SMA in general as well as the research that is currently being done.

Learn About SMA is a resource for Spinal Muscular Atrophy (SMA) patients, families and researchers. The site includes stories of living with SMA and recent advances in the understanding and potential treatment of SMA.Their site is divided into five sections that can be browsed in a non-linear fashion, with video interviews, animations, and narrative.

Muscular Dystrophy Association (MDA) The Muscular Dystrophy Association is the source for news and information about neuromuscular diseases, MDA research, treatments, cures and services for adults and children withmuscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases including Spinal Muscular Atrophy and their families. They fund worldwide research; by providing comprehensive health care services and support to MDA families nationwide; and by rallying communities to fight back through advocacy, fundraising and local engagement. It is special work powered by special people who give generously. Visit the website above or follow on Facebook at facebook.com/MDAnational and @MDAnews.

National Organization of Rare Diseases (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. For more than 30 years, they have been providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments. They support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases. For information on Spinal Muscular Atrophy visit their page on SMA.

SMA Foundation mission is to accelerate the development of a treatment for SMA, the number one genetic killer of infants and toddlers. The SMA Foundation was established in 2003 by Loren Eng and Dinakar Singh, parents of a child with SMA. SMA funds research worldwide–over $100M has been spent on basic, translational, and clinical research. They have invested more than $30M on developing critical, validated research tools and other drug discovery assets. Our mandate is to ensure that all of the results of our research funding are made readily available to every SMA researcher with minimal cost and obligation. For more information, contact them at SMA Foundation, 888 Seventh Avenue, Suite 400 New York, NY 10019, Phone Main: 646-253-7100, Toll Free: 877-FUND-SMA, Fax: 212-247-3079 or send email to info@smafoundation.org

SMA Medical Supply is a company started by a mother of a child with SMA whose goal is to serve the needs of SMA families as well as others afflicted by many different types of diseases and conditions. Understanding that long wait times for life-sustaining equipment, an unwillingness to replace broken devices, and failure to stock backup equipment were commonplace with medical equipment providers, she created SMA Medical Supply to help fill the gap. You can contact SMA Medical Supply by Mail: S.M.A. Medical Supply, 11691 Hill Country Circle Ponder, TX 76259, Phone: 269-274-1414, Fax: 773-409-9232, Email: info@smasupply.com, or by sending a note on their Product Request Form.

SMA Support Inc. is an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease, Spinal Muscular Atrophy. SMA Support Inc. is dedicated to providing information and support in any manner needed to any and all families affected by the disease Spinal Muscular Atrophy. Such support consists of medical equipment, funeral expenses, medical supplies, flight costs to required appointments, educational funding, equipment to maintain quality of life, live and internet support, and other forms of information as well as support not covered by insurance that such families may need. It is our goal to improve both the quality and quantity of life for those children afflicted with Spinal Muscular Atrophy to the best of our ability. Y ou may reach us at: SMA Support Inc., PO Box 6301, Kokomo, IN 46904-6301 or Phone: 765-688-0247 or send Email to: laura@smasupport.

State Listings

Georgia

SMA Angels Charity is a 100% volunteer, non-profit charity dedicated to fight in the battle against Spinal Muscular Atrophy ("SMA"). SMA is a devastating neuromuscular disease. In its most severe form it is the "Number One Genetic Killer of Children Under Two". At present there is no cure or treatment. The charity was formed in 1999 when twins Cassidy and Skylar Swanson were diagnosed with the severest form of SMA. The goals of the charity are: to raise money for research devoted to finding a cure or treatment for SMA, to provide funding for medical assistance and better quality of life for children afflicted with SMA and to increase awareness and education about SMA. For more information contact the SMA Angels Charity, Inc., P.O. Box 308, Richmond Hill, Ga. 31324 or Phone: 912-727-4SMA or send email to:smacharity@aol.com

Massachusetts

Family Ties of Massachusetts is a statewide information and parent-to-parent support project for families of children with special needs and chronic illness. Via their Parent-to-Parent program they bring together parents facing similar challenges in raising their children with special needs. If you are a parent you may complete their Parent-to-Parent Request Form. A request may be focused on issues such as a child’s diagnosis or developmental stage; life activities such as recreation, childcare issues, or developing friendships; or sibling concerns. The Parent-to-Parent Coordinator makes direct contact with you to discuss your concerns. The Coordinator will then match you with a parent who can meet your needs. For more information, call their voice mail at (800) 905-8437. Messages are retrieved twice on a daily basis.

Mississippi

Stop SMA is a non-profit organization located in central Mississippi that raises money and awareness by hosting and educating the public about Spinal Muscular Atrophy. Their website has simple and helpful information about SMA. You can contact them by Email: info@stopsma.org or send mail to: Post Office Box 670 Raymond, MS 39154.

Country Listings

Australia

Spinal Muscular Atrophy Association of Australia Inc. is an Australian organization set up to provide awareness to the general public and provide professional services, ongoing support, and information to those directly and indirectly affected by SMA. SMA Australia also aims to provide financial support for special equipment and to establish an equipment pool so that no one may go without the tools they need. They also help promote and fund care options, possible treatments, and research. They are located at Suite 28 Building 4 195 Wellington Road Clayton Vic 3168, and can be contacted by Phone: (03) 9545 3633 or Email: smaaa@amaaustralia.org.au

Canada

Families of Spinal Muscular Atrophy Canada (FSMAC) is the national charity dedicated to supporting Canadians affected by Spinal Muscular Atrophy and supporting research in our quest to find a cure or treatment for SMA. Send mail to: 103 – 7134 Vedder Rd. Chilliwack, BC V2R 4G4, Phone: (855) 824-1277, (toll free) (604) 824-1277 or Fax: (604) 824-1363.

United Kingdom

Spinal Muscular Atrophy Support offers information and support services to empower families and individuals affected by all forms of SMA and raise awareness of the condition. They also fund and support research addressing the causes, treatment and management of SMA. For more information, contact them at 40 Cygnet Court, Timothy's Bridge Road, Stratford upon Avon, Warwickshire CV37 9NW U.K. or Phone Tel: +44 (0)1789 267 520 Fax: +44 (0)1789 268 371