Any with ALS?

[Margaret Diann]

Amyotrophic Lateral Sclerosis (ALS) is a motor neuron disease, first identified in 1869 by the noted French neurologist Jean-Martin Charcot. Although the cause of ALS is not completely understood, the 1990's have brought a wealth of new scientific understanding about the physiology of this disease.
Lou Gehrig, with whom ALS is most commonly associated, first brought national and international attention to the disease back in 1939 when he abruptly retired from baseball after being diagnosed with ALS. To learn more about Lou Gehrig, visit www.lougehrig.com.

However, ALS is not just Lou Gehrig's disease and it knows no boundaries. More

Gulf War Study Q & A
Have there been any environmental conditions identified in this study that trigger ALS?

Thus far, no environmental triggers have been identified in this study. If one or more triggers were identified, this would provide invaluable information about the disease mechanism. It is likely that both genetics and environmental exposure are factors. Consequently there is real interest in initiating other studies to look at gene-environment interactions.

The second phase of this study includes in-depth interviews with veterans to determine environmental exposures by documenting which branch of the military they served in and the specific location where they were stationed. The analysis of the data is continuing; however, the small numbers of people in the study are anticipated to make statistically significant conclusions difficult.

What is the significance of this study to the non-veteran population?

By learning more about the incidence and cause of ALS in subgroups, like people with familial ALS or the military veterans, we will know more about ALS in general that could be applied to others with the disease.

Are studies planned to monitor the occurrence of ALS among veterans of the Iraq War?

The ALS Association is not aware of such an effort; however, the Veterans Affairs Registry is open to all veterans living with ALS. In our patient database, The ALS Association records the military status of people with ALS who contact us. This aggregate data could be useful in raising potential questions about the incidence of ALS following the conclusion of the Iraq War. ALS begins before the symptoms are recognized. This delay can sometimes be years after the disease actually started.

Why do Gulf War veterans, and specifically those in the Army and Air Force have higher rates of ALS?

The higher rates of ALS in these branches of the service are interesting and may be an important finding. At this time, it's not known why theses rates are higher and more research is needed.

If I am a veteran, can I still enroll?

The current study is completed; however, information from all veterans with ALS is being collected in the new VA ALS Registry. For information about joining the registry, contact the Department of Veterans Affairs at (877) 342-5257 or norma003@acpub.duke.edu, or contact The ALS Association at (800) 782-4747 or alsinfo@alsa-national.org.

Since Gulf War veterans diagnosed with ALS are receiving veterans benefits, will the same be true for a Gulf War veteran who did not participate in the study, i.e., now that the study is closed, will veterans diagnosed subsequently be entitled to receive benefits?

Yes, Gulf War veterans with ALS who were deployed to the Gulf region are now entitled to receive benefits from the Department of Veterans Affairs (VA). This eligibility is not connected to participation in the study. Contact the VA for more information.

Given the concerns raised in the editorial regarding the small number of cases involved in this study, what is the significance of this report?

It was important to conduct this study to address the questions from veterans with ALS, The ALS Association and the Department of Veterans Affairs about the possible increased risk of ALS from service in the Gulf War region. While we hope that single studies will provide irrefutable answers to complex questions, this rarely happens in science.


The Department of Veterans Affairs web site and toll free telephone number are:
www.va.gov
(877) 342-5257

http://www.alsa.org/news/article.cfm...FTOKEN=6679939

& Links

http://www.alsa.org/resources/link.c...FTOKEN=6679939

[Hawk]

slightly dated news release from March has some info of interest to those with service related Multiple Sclerosis


http://www.pva.org/newsroom/PR2004/pr04020.htm


PVA Newsroom
Contact: Office of Public Affairs Media Relations Department of Veterans Affairs
Washington, DC 20420
(202) 273-5700 www.va.gov


VA Announces the New Multiple Sclerosis Centers of Excellence (MSCoE) Website
March, 2004, Washington, DC??We are very pleased to publicize the opening of the new Multiple Sclerosis Centers of Excellence (MSCoE) website at www.va.gov/ms This is the result of months of dedicated hard work by a number of individuals at both Centers of Excellence under the leadership of Michael Hatzakis, Jr., MD, Mark Haselkorn, PhD., and Mr. Charles Lai.

Please explore the website and provide us with feedback at http://www.va.gov/ms/contact.asp useful to you and your patients.

We plan on continually adding improvements and increasing the content of this website. If you would like to participate in creating additional content for the website, please let us know.?

Christopher T. Bever, Jr., M.D., Director
MS Center of Excellence ? East
Jodie K. Haselkorn, M.D., M.P.H, Director
MS Center of Excellence ? West
Dennis Bourdette, M.D., Co-Director
MS Center of Excellence ? West

[Hawk]

and for those with ALS this maybe the study maggie is refering to.
but i think you may be able to be added to the registry of veterans with ALS

--------------------------------------------------------------------------------
http://www.mdausa.org/research/ct-alsveterans.html

Active Neuromuscular Disease Clinical Trials & Studies Selective Listing
DISEASE CLASSIFICATION(S):
Amyotrophic Lateral Sclerosis

NAME OF CLINICAL TRIAL/STUDY:

National Registry of Veterans With Amyotrophic Lateral Sclerosis

PURPOSE AND RATIONALE:
The Department of Veterans Affairs (VA) is developing a nationwide registry of living veterans who have amyotrophic lateral sclerosis (ALS). This effort is directed by the Epidemiologic Research and Information Center (ERIC) at the VA Medical Center in Durham, N.C., with cooperation from the VA Medical Center in Lexington, Ky.
This registry will help the VA to understand patterns of ALS among veterans and provide valuable data for future studies. Specific objectives for the Veterans? ALS Registry include the following:

to identify as completely as possible all living veterans with ALS
to follow the health status of these veterans
to collect data that will be available for approved studies examining the causes of ALS
to provide a way for the VA to inform veterans with ALS about research studies for which they may be eligible

STUDY DETAILS:
Veterans who qualify for the registry will be asked to complete a brief telephone interview, including basic questions about their disease and military history. Brief follow-up interviews with registry enrollees will be conducted twice a year to assess health and functional status. The VA may also contact registry participants about future ALS studies in which they may be able to participate.

Additional information can be found on the Web site of the Epidemiologic Research and Information Center (ERIC) .

OPENING/CLOSING DATES: Opened March 2003/Closing approximately 2006

TARGET NUMBER OF PARTICIPANTS: No set number; all veterans with ALS who are willing to participate

RECRUITMENT STATUS: Active

ELIGIBILITY REQUIREMENTS:
All living veterans who have been diagnosed with ALS are encouraged to participate in this research registry. For veterans who may not be able to contact the VA on their own, family members or friends are encouraged to contact VA researchers on the veteran?s behalf.

MAIN SPONSORING LOCATION/CONTACT:
To contact the VA study coordinators, eligible veterans or family and friends of eligible veterans can call, send e-mail or write.

ALS Registry (152)
VAMC
508 Fulton Street
Durham, NC 27705
phone (toll-free): (877) DIAL-ALS; (877) 342-5257
e-mail: ALS@med.va.gov


Active Neuromuscular Clinical Trials and Studies List

[Margaret Diann]

http://www.valdezlink.com/gwv/scott.htm

http://www.patriotfiles.com/forum/sh...382#post191382

By the way, MS is an autoimmune dysfunction of the nervous system (immune system attacking YOU). I suspect besides the common denominator, autoimmune hemoltyic anemia, that most add on ailments are also 'autoimmune' (1-30-05)


Thanks for that info, Hawk!

[Hawk]

glad to help maggie,

also this recent article may be of interest as well its referances the recent report by the VA advisory committee and one of its findings is related to ALS


HAwk :cl:
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WASHINGTON, Nov. 16 -- The Research Advisory Committee on Gulf War Veterans' Illnesses, a Congressionally-chartered panel of scientific experts and veterans, has released its first major report on Gulf War illnesses. In response to the report's findings, Secretary of Veterans' Affairs (VA) Anthony J. Principi has announced that VA will no longer fund research studies that focus on stress as the primary cause for Gulf War
veterans' illnesses. The report's findings and the Secretary's announcement represent a significant departure from previous government actions on the multisymptom conditions affecting veterans of the 1991 Persian Gulf War. Secretary Principi also committed $15 million in fiscal year 2005 to support research recommended by the report, including a new program to identify and evaluate treatments for Gulf War veterans' illnesses.
Based on the latest research findings from hundreds of scientific studies and government reports, the Committee concluded that:

-- A substantial proportion, 25 to 30 percent, of veterans who served in the 1991 Gulf War suffer from illnesses characterized by persistent headaches, memory problems, pain, fatigue, and other chronic symptoms

-- Gulf War illnesses are not explained by stress or psychiatric illness for the large majority of ill veterans

-- Ill Gulf War veterans exhibit evidence of neurological
problems, including a significant excess in the rate of
amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease

-- Accumulated research supports a probable link between
Gulf War illnesses and neurotoxic exposures encountered in
the war

-- Treatments to improve the health of ill veterans are urgently
needed

-- Research on Gulf War veterans' illnesses has important
implications for current and future military deployments and
homeland security

"During the past few years, studies at leading research
centers have dramatically increased what is known about Gulf
War illnesses and changed long-held beliefs," said James
Binns, Research Advisory Committee Chairman.

"Past research investments by the Department of Veterans Affairs and the Department of Defense have at last begun to pay off. We are also fortunate to have in Secretary Principi a leader who has taken these conditions seriously and will act on these findings."
Gulf War veterans' illnesses is the name used to describe the chronic health problems reported for over 13 years by veterans who served in the 1991 Gulf War, earlier referred to as "Gulf War Syndrome." Government reports indicate that many Gulf War veterans were exposed to potentially harmful substances during deployment, including a variety of compounds that can
adversely affect the nervous system.
The 143-page Committee report summarizes the results of hundreds of scientific studies and government reports. It concludes that recent studies and the large body of available research mandate fundamentally different conclusions than those of previous government panels. The report also indicates that recent discoveries point the way for follow-up research to
pinpoint the exact mechanisms underlying Gulf War veterans' illnesses and assist in the development of effective treatments.

"Gulf War illnesses are complex, and are likely the result of a number of factors related to service in the 1991 Gulf War," according to Dr. Lea Steele, the committee's Scientific Director. "Studies consistently indicate that stress and psychiatric illness do not explain the health problems of most ill veterans. In contrast, a growing body of scientific evidence implicates substances to which veterans were exposed during the war, including a variety of neurotoxins.
Other exposures may also have contributed to these problems,
and will be addressed in future reports."

"Research on Gulf War illnesses has broad implications for current and future military deployments as well as homeland security, given the urgent need for medical defenses against chemical threats," concluded Binns. "A comprehensive effort, marshalling the resources of the Departments of Veterans
Affairs, Defense, and Health and Human Services, as well as private medical research institutions, could produce rapid and much needed results." For additional information, or to access the report please visit the Research Advisory Committee on Gulf War Veterans' Illnesses website at
http://www.va.gov/rac-gwvi .

About the Research Advisory Committee on Gulf War Veterans' Illnesses The Research Advisory Committee on Gulf War Veterans' Illnesses was created by Congress in 1998 and first appointed by Secretary of Veterans Affairs Anthony J. Principi in January 2002, to advise VA on research related to the health consequences of service in the 1990-1991 Gulf War. The
committee consists of scientific experts and Gulf War veterans, and is chaired by James Binns, former Principal Assistant Secretary of Defense and a Vietnam veteran.

Media Contact: Dr. Lea Steele, Scientific Director
Phone: 785-350-4617 or email: RAC@med.va.gov


SOURCE Research Advisory Committee on Gulf War Veterans'
Illnesses
Web Site: http://www.va.gov/rac-gwvi