The ASAP (American Syringomyelia & Chiari Alliance Project) provides support and information to people who, like Christine, have syringomyelia (SM), and to those who have Chiari Malformation, (CM), an often related disorder.
Syringomyelia is a condition in which a cyst forms somewhere in the spinal cord and can eventually destroy it. In Chiari Malformation, a section of the brain's cerebellum, the cerebellar tonsils, are pushed out of their usual position at the back of the skull and press into the spinal cord and brain stem. Often congenital (present at birth), Chiari is a major cause of syringomyelia.
When she was diagnosed Christine recalls, "I went on to the Web and looked for everything I could find about SM. It was hard to see that there was so little really known about SM and so little being done to find a cure."
Christine continues, "Then I found the ASAP website. It was the first place I discovered that had real information about what I was going through, that had people who truly understood what I felt and the frustration I was facing."
The dual mission of ASAP is to help those who have either or both of these disorders while also campaigning to find effective treatments to manage or cure them.
About ASAP
Barbara White and her husband, Don, started American Syringomyelia Alliance Project in 1983. Barbara (now deceased) had syringomyelia and Chiari malformation. They formed the group to find support and information for themselves while developing an organization that brings together those who have the disorder with physicians, scientists, and researchers. The organization is respected throughout the world for its work to improve the understanding of and treatment for Chiari and syringomyelia.
Some of the world's most noted researchers of neuromuscular and spinal cord disorders sit on ASAP's Medical Advisory Board including physicians and specialists from the National Institutes of Health (NIH), The Chiari Institute and other medical centers.
Many Programs and Services
The ASAP Website is divided into several sections containing medical information, news, and ASAP activities. One section is primarily for physicians and others are directed to members and the public. In the online forum and message board, members can discuss and share information and experiences about SM\CM with one another in the online forum and message board.
The ASAP also publishes a bimonthly newsletter, Connections, containing ASAP news and medical information. Some of their other programs include:
- Media Library - Talks and presentations by specialists on SM\CM.from the ASAP annual conferences. These can be purchased on DVD\Videos
- Chat Room - The ASAP online chat room is always open with live chats available several times a week
- Bobby Jones Open Grants - For those who need special equipment grants of up to $1,000.00 may be awarded.
- Bobby Jones Open Scholarships - A scholarship program for members with SM or CM and their children
- ASAP Medical Alliance -Forming alliances, working coalitions is a major theme at ASAP. Their medical alliance is a membership program for physicians and all other health care practitioners. It's purpose is to build a network among various professionals that will, "...promote collaboration of medical professionals, research scientists and hospitals."
More programs and services are listed on the ASAP website.
Research and Fellowships
The ASAP sponsors research and fellowships to further study and understanding of SM\CM. Recently ASAP awarded a grant of $210,000 to sponsor a study of the results of surgery for patients who have CM and SM.
To support their studies related to SM\CM, in 2007-2008 ASAP provided fellowships to neurosurgical residents at UCLA and Johns Hopkins Hospital.
ASAP Annual Conference
One of the highlights of its work is the ASAP Annual Medical Conference. The meeting brings together people who have SM or CM and specialists in the field. It is an opportunity to network, form relationships while learning and sharing information on research and treatment. The event also provides question and answer sessions led by doctors and an awards banquet. The conference is held in July in different locations, to allow as many as possible a chance to attend and participate.
The help and support from ASAP makes living with syringomyelia easier for Christine and many others. She says, "They offered me a place to ask questions, get support that I could not find among my family and friends because they were going through the same things I was. ASAP gave me the hope I needed to be able to deal with SM - for that I am always going to be grateful."
Related links:
Living With a Rare Spinal Cord Disorder
Source:
American Syringomyelia & Chiari Alliance Project (ASAP)
PO BOX 1586
Longview, TX 75606-1586
PH: 1-800-272-7282
Resources:
American Syringomyelia & Chiari Alliance Project
Disclaimer: The information contained in this article is for educational purposes only and should not be used for diagnosis or to guide treatment without the opinion of a health professional. Any reader who is concerned about his or her health should contact a doctor for advice.
Zoe Langley - Zoe Langley is a writer living in Kentucky. She is a past winner of the Seattle Writers in Performance Award. She has a passionate ...
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