The American Syringomyelia Alliance Project (ASAP) is non-profit, member organization devoted to helping people with Chiari and syringomyelia. 

To learn more about ASAP, it's mission, it's services, and it's goals, we put Mark Kane, ASAP's President, In The Spotlight...

How and why did you become involved with ASAP?
K:  My daughter, Laura, was diagnosed with CM and SM in 1993. After three, almost four, surgeries in six months, we realized exactly how little was known about the disorders. My wife, Barbara, became active on the Board of Directors in 1997. I became involved in 2000 helping the Board with its strategic planning process. Ironically, we have discovered recently that my wife, Barbara, also has CM.

What do you hope to accomplish as President?
K:  I hope to help ASAP structure itself to be successful in influencing much more CM and SM research while providing improved services to those currently affected by CM and SM.

ASAP’s mission statement is pretty broad, what specific goals – both near and long term – does the organization have?
K:  ASAP’s short-term goal is to structure the Board and secure the staff to expand its ability to raise money outside the subset of people affected by the disorders and their immediate contacts. In other words, to accomplish our mission we need to secure funding at a much greater level. These funds will need to come from both the public and private sectors.

Our longer term goal is to fund and influence research, which reduces neuropathic pain as well as finds an ultimate cure or prevention for the disorders.

What services does ASAP provide its members and/or the public?
K:  The organization's premier annual event is its medical conference which includes access to many of the world’s leading CM and SM experts and also provides a forum for their collaboration and discussion of new ideas. For those who are not able to attend the conference, conference tapes and notebooks are available at a nominal cost.

ASAP also provides peer-reviewed medical information. The information published is approved by a member of the Medical Advisory Board or reprinted with permission from a peer-reviewed medical journal.

ASAP provides an email listserv and online message board for members to communicate and help each other with health as well as general life issues. This communication also comes in the form of peer phone support, local support groups or alliances, newsletters and the ASAP.org web site (www.asap.org).

What does the organization do well?
K:  The annual medical conference is rated high by members as well as physicians.

Where does the organization need improvement?
K: ASAP over time will need to increase both the amount and frequency of information that has been reviewed by qualified specialists

Relative to other conditions there is virtually no Federal money spent on researching CM/SM, why do you think this is?
K:  As I noted above, changing ASAP's status with federal funding agencies is a key component of its goal to increase funding of CM and SM research.

What type of research has ASAP sponsored?
K:  ASAP has sponsored a combination of research designed to address the pain that CM and SM patients experience, as well as the genetic and mechanical causes of the disorders to eventually find a cure or cures.

How does the organization select research to sponsor?
K:  The organization seeks proposals from a broad array of approved research facilities. ASAP’s Research Committee reviews the grant proposals and makes recommendations to the full Board of Directors. ASAP’s Research Chair, Marcy Speer, PhD, has begun the process of bringing experts in a particular research field to provide additional evaluation of the grant proposals.

Do you think the research dollars are making a difference?
K:  Some of ASAP’s grants have created meaningful, tangible strides that address neuropathic pain. The direct benefit of basic research in determining the cause of the disorders may not be known for years to come. The short-term indications are that ASAP is providing a forum for researchers around the world to compare results and techniques that will lead to more tangible progress in the future. ASAP’s genetic research has provided an important side benefit. We now have prevalence data that has been published in respected journals. This data shows that the National Institutes of Health's original estimate of only 20,000 Americans affected by syringomyelia was severely understated. Dr. Speer’s latest estimate, including Americans with CM, is approximately 250,000. This kind of data gains the attention of federal funding agencies.

What is the medical alliance?
K:  The Medical Alliance expands physician and scientific involvement in ASAP beyond the Medical Advisory Board. As with most aspects of ASAP, its long-term mission is dependent on its ability to expand beyond its current boundaries.

What is ASAP’s policy on referring people to specific doctors?
K:  ASAP employees, volunteers and Board members, for the most part, are not physicians and therefore are not in the position to refer people to any doctor, practice or hospital. ASAP provides information that helps the patients and or caregivers use their best judgment when selecting and interviewing physicians.

What is the organization’s annual budget?
K:  ASAP’s budget has been in the $500,000 range. We plan to step up to the $750,000 level relatively soon.

Where does most of the money come from?
K:  The majority of ASAP’s revenue comes directly from members or through the fundraising efforts of members. This year, ASAP received a $25,000 grant from the Christopher Reeves Foundation. We hope this is the first of many grants from foundations not tied directly to an ASAP member.

What do you hope ASAP will look like in 5 years?
K:  ASAP will be a professionally run organization that is generating and influencing millions of dollars in research. Vital to the success of accomplishing its mission, ASAP will continue its commitment to improve the lives of its members.

What is the single most important thing you want to accomplish this coming year?
K:  ASAP Board members, staff and volunteers will be in place to take us to the “next step” in raising funds and influencing research while providing services to improve the lives of those affected by CM and SM.
 

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In the Spotlight:

The American Syringomyelia Alliance Project (ASAP)

• 501(c)(3) non-proft

• Mission:  To improve the lives of persons affected by Syringomyelia, Chiari Malformation, and related disorders while we find the cure.

• Services:  Annual medical conference, Sponsored research, On-line message board, Local support groups, Newsletter

• Membership: Basic membership costs $30

• www.asap.org