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Age:
25
Joined:
Jun 25, 2008
Latest Activity:
1 month ago
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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.
A small group of parents started Families of SMA in 1984. They wanted to raise funds for SMA research to cure the disease, and support all affected families. Back then, very little was known about Spinal Muscular Atrophy. Very little research was being conducted. No one knew the cause of the disease let alone how to find a treatment and a cure. Patients and families affected by SMA were on their own and had little hope. Today, FSMA has a different story to tell. Families of SMA has created hope for our community that did not exist in 1984. We have raised and funded over $50 million for SMA research. Our support comes from generous individual donations and numerous fundraising events held by volunteer families and our Chapters.
Families of SMA funds and directs the leading SMA research programs. Our successful results and progress from basic research to drug discovery programs to clinical trials provides real hope for families and patients.
-Families of SMA has funded 5 multi-center clinical trials for existing drugs that have potential for SMA.
-FSMA has funded 5 leading new drug development programs for therapies specially designed to treat SMA.
-FSMA has invested significant resources into alternative approaches that show promise to cure SMA.
We are a non-profit, 501(c)3 tax exempt organization. Today we have 29 Chapters throughout the United States and over 70,000 members and supporters. We are a collaborative organization where families and friends and researchers are all working together towards the same goal.
- 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.
A small group of parents started Families of SMA in 1984. They wanted to raise funds for SMA research to cure the disease, and support all affected families. Back then, very little was known about Spinal Muscular Atrophy. Very little research was being conducted. No one knew the cause of the disease let alone how to find a treatment and a cure. Patients and families affected by SMA were on their own and had little hope. Today, FSMA has a different story to tell. Families of SMA has created hope for our community that did not exist in 1984. We have raised and funded over $50 million for SMA research. Our support comes from generous individual donations and numerous fundraising events held by volunteer families and our Chapters.
Families of SMA funds and directs the leading SMA research programs. Our successful results and progress from basic research to drug discovery programs to clinical trials provides real hope for families and patients.
-Families of SMA has funded 5 multi-center clinical trials for existing drugs that have potential for SMA.
-FSMA has funded 5 leading new drug development programs for therapies specially designed to treat SMA.
-FSMA has invested significant resources into alternative approaches that show promise to cure SMA.
We are a non-profit, 501(c)3 tax exempt organization. Today we have 29 Chapters throughout the United States and over 70,000 members and supporters. We are a collaborative organization where families and friends and researchers are all working together towards the same goal.
Country:
United States
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(7)
Recent Activity
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FamiliesofSMA1 uploaded a new video
The First Annual Gala of Hope to Cure SMA was held in Hollywood, Florida, with the South Florida Chapter on November 17, 2011. The event raised ove...
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FamiliesofSMA1 uploaded a new video
Here is an interview with NINDS Program Director John Porter from the 2011 Annual SMA Conference.
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FamiliesofSMA1 favorited a video
Kavita Channe catches up with former Giant and 2x Superbowl Champ Leonard Marshall at the Gala of Hope benefitting Families of Spinal Muscular Atro...
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FamiliesofSMA1 favorited a video
Kavita Channe catches up with former Miami Dolphin Jeff Cross at the Gala of Hope benefitting Families of Spinal Muscular Atrophy in Hollywood, FL....
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FamiliesofSMA1 favorited a video
Kavita Channe catches up with Ki-Jana Carter (former Penn State star running back and 1st round 1st pick in 1995 NFL draft) at the Gala of Hope be...
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Subscribers
(119)
Channel Comments
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DBHuntington
(4 months ago)
I LOVE you Angie, Kyra, and all your great friends!
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GoogooEyedChihuahua
(6 months ago)
I love you guys just keep on trying to find a cure never give up I have SMA and I'm counting on you ;)
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ForTodayE99
(1 year ago)
the vasquez family just lost angel vanessa vaesquez 6 month old of this dissease
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