We have two grandchildren with SMA type 1.
SMA is the number 1 genetic killer of children under the age of 2. Our grandchildren have outlived their life expectancy and are now 12 & 14 years old. They take 24/7 365 care and their parents are dedicated to these children. The children are very bright and use computers and drive power chairs. These children are happy children and bring joy to our lives.
We have been involved with Families of SMA, now, Cure SMA for 13 years. I am the fundraising chairperson for the OKI Chapter of Cure SMA and my daughter-in-law is the president. My husband is a board member on the national board in Libertyville, IL. Our chapter has raised over $1 million for research.
Cure SMA raises money for research to find a cure and now has 17 active drug programs in the pipeline, including six clinical trials. Read more at www.curesma.org
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- EIN 36-3320440
- (800) 886-1762
- 925 Busse Road Elk Grove Village IL 60007 USA
- http://www.curesma.org
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Nonprofit Overview
Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Health, Nerve, Muscle & Bone Diseases
Mission: Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure 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;
- Embracing all touched by SMA in a caring community. Our vision is a world where Spinal Muscular Atrophy is treatable and curable.
Programs: To date Families of SMA has raised and invested over $40 million towards SMA research to discover and develop a treatment and cure for SMA.Families of SMA sponsors the leading annual global conference devoted entirely to SMA research, the International Spinal Muscular Atrophy Research Group Meeting. Researchers gather from around the world to share results and exchange ideas.A conference for families is held in conjunction with the research conference - for families to learn about the status of SMA research, share the latest in disease management techniques, and network with other families.We publish a newsletter, Directions, quarterly, and we have an interactive web site for families to access the latest information and support each other. We also publish a quarterly research publication "Compass" to update members and donors on SMA research and clinical trials. FSMA maintains a web site and forums to create a ongoing knowledge base. Our 800 # is available 24 hours a day for emergency support. FSMA also loans equipment.