Standard of Care for SMA Patients
Resources: Online
Resources: At Stanford
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Standard of Care for SMA Patients
We are pleased to announce the publication of the Consensus Statement for Standard of Care in Spinal Muscular Atrophy in the Journal of Child Neurology's August 2007 Issue.
- This is a document for families, caregivers, and health professionals working with SMA patients. It covers all of the relevant medical topics, including Gastrointestinal issues, Pulmonary care, and Orthopedics.
- The findings contained within are the result of the collaboration of 12 core committee members with more than 60 experts in Spinal Muscular Atrophy. Since its formation in 2005, the group developed their consensus through conference calls, email communications, a Delphi survey, and 2 in-person meetings.
- A Family Guide to the Standard of Care Consensus is now available for this document to make it more understandable for those without much medical background and is addressed directly at families as opposed to doctors.
- For the European organization TREAT-NMD (Translational Research in Europe- Assessment and Treatment of Neuromuscular Diseases) Dr. Wang has also composed an abridged version of this 23-page journal article. In it, the key information has been broken down into bullet points, and some sections have been emphasized in bold print for easier reading.
- You can either browse the SMA Factsheet online at the TREAT-NMD website (this may be a better option for anyone with a slower internet connection), or download a PDF version of the SMA Factsheet to view it all at once.
- We have also posted some of the information directly on the Stanford SMA Website in outline form at SMA at Stanford: Standard of Care. In places, the language in the original document is intended for a medically sophisticated audience, so here we have also tried to present the information in a more accessible way.
Resources: Online
Here is a partial list of SMA resources on the Internet. These sites contain information on SMA funding, the biological basis of SMA, and support networks for SMA patients, their families, and care providers. They also contain a large number of links to even more websites.
(Note: These sites will open in new browser windows)
The SMA Foundation, SMA Family and Patient Organizations
The SMA foundation is a non-profit organization dedicated to accelerating the development of a treatment and cure for SMA. It seeks to increase public awareness of SMA and encourage funding for SMA research. It seeks out government funding for SMA research efforts, as well as working with parents' organizations and other private sources of funding. They provide a major source of funding for our work here at Stanford.
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The Muscular Dystrophy Association, USA
This is the official site for the United States branch of the Muscular Dystrophy Association. It contains lots of helpful information on the diagnosis and treatment of SMA and many other neurological disorders. There is also a feature that will locate MDA representatives and medical personnel in your local community. The MDA, USA is another source of funding for our work here at Stanford.
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AmSMART stands for Am erican S pinal M uscular A trophy R andomized T rials. Based in Dallas, Texas, AmSMART is a consortium of clinical researchers at fifteen sites across the United States and Canada. Their primary mission is to test new drugs in the fight against SMA and develop means of clinical assessment for SMA patients that are less invasive than current standards.
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Andrew's buddies is an organization dedicated to promoting SMA research. On their site you can find frequently-updated articles on SMA research written to both the scientific and lay communities. They have multiple chapters in the United States, primarily on the East Coast, as well as one in Toronto, Ontario, Canada.
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Families of SMA is a non-profit organization dedicated to eradicating SMA, providing support to families afflicted by SMA and educating the public and professional communities on the disease. They are an international organization with chapters in Canada, Australia, Hong Kong, Italy, and Israel, as well as 19 local chapters throughout the United States.
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SMA Support is an all-volunteer non-profit organization dedicated to providing information and support to family, friends, individuals and caregivers dealing with spinal muscular atrophy. Their site contains a guestbook which can be used for posting comments and pictures as well as several e-mail chat lists.
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Aaron and Stephanie Miller, parents of a child with SMA Type I, started the Hope and Light Foundation in December of 2004. Through the foundation, they hope to help bring about a cure for SMA through research. They also strive to help with education: for the public, for SMA parents, and for the medical community. The Hope and Light Foundation has also provided funding for our SMA research here at Stanford.
Resources: At Stanford
Stanford University Department of Neurology
This is the main site for Department of Neurology at Stanford University. Here, you can find information on the general neurology clinics at Stanford as well as our clinics for various subspecialties. There are also links to other neurology research projects here at Stanford.
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Stanford University Facilities
The Stanford Hospital and Clinics
Lucile Packard Children's Hospital
The Stanford University School of Medicine
Stanford University
