Monthly Awareness Campaign for August:
SMA – Spinal Muscular Atrophy
What is SMA?
Spinal Muscular Atrophy (SMA) is a motor neuron disease which affects the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.
*There is currently no treatment or cure for SMA.
• #1 genetic killer of children under two.
• One in every 6,000 babies is born with SMA.
• 1 in 40 or 8 million Americans are carriers.
For a more in depth look at SMA, please refer to: http://en.wikipedia.org/wiki/Spinal_muscular_atrophy
In August, hipS-sister will be donating $2.50 from every reversible left coast in violet/carbon sold online to an organization called Families of SMA. With your help, we hope to be able to make a small difference towards a worthy cause.
Families of SMA:
Families of SMA is the world’s leader focused on funding SMA research to develop a treatment and cure or the disease. We have funded and directed over $55 Million for leading SMA research programs. FSMA has 31 Chapters and 105,000 members and supporters. We also host the world’s largest SMA Conference bringing together over 1,300 families and researchers annually from around the world.
- Families of SMA provides services to more than 70% of all SMA families in the United States.
Research & Family Support:
Families of SMA is the leader in SMA research and has funded over half of all SMA drug programs. Their successful results and progress from basic research to drug discovery programs to clinical trials provide real hope for families and patients.
Over the last 30 years, FSMA has:
• Discovered a back-up gene, SMN2, for the disease.
• Funded 5 multi-center clinical trials for existing drugs.
• Funded research that led to first ever clinical trial for a new drug designed specifically for SMA.
FSMA is attacking the disease from every angle possible. There are now more new drug programs in development than at any point in time, with 15 SMA therapeutic programs in various stages of development, up from just 1 a decade ago. FSMA has worked to build up the SMA drug pipeline. There are now 3 novel programs testing drugs in human clinical trials for SMA and 11 companies investing in SMA drug programs.
The Family Support Department provides crucial services to all families affected by SMA. FSMA supports families by sending out numerous resources such as:
• Type I, II and III newly diagnosed care packages which provide SMA families with adapted toys, blankets, swings and other items that help stimulate their children.
• Equipment such as bath chairs, car beds, strollers and manual wheelchairs.
• Care services through our Caring Series Booklets and our on-line “Ask the Expert” service.
• Local support through our 31 Chapters nationwide.
Help us be the change in August! Spread the word about Spinal Muscular Atrophy. You can help by purchasing our reversible left coast in violet/carbon OR going directly to www.curesma.org to make a personal donation.