letter-writing campaign to the NIH

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

letter-writing campaign to the NIH

Postby Cece » Tue Feb 22, 2011 12:50 am

I want to do something.

Dr. Haacke has submitted a second proposal for funding to the NIH, after his first was rejected. Does his second proposal have any better odds of getting passed than the first one did?

Dr. Dake's 6 million dollar study that will be launching soon had to be supported entirely by private funding.

Typically much of MS research has been funded by pharmaceutical companies. This has not served us well.

I propose that we launch a letter-writing campaign to the director and other staff at the National Institute of Health. They are making decisions to fund or not fund research into CCSVI. With CCSVI having the potential to be a major break-through, our researchers need funding so that we can get answers as quickly as possible.

Let's ask the NIH to support research of CCSVI in Multiple Sclerosis. We can ask them to approve Dr. Haacke's proposal and any other proposed research into CCSVI. We can tell them of our own experiences with CCSVI and what impact being treated has made in our lives.

Some bullet points might be:

* CCSVI is a condition in which the major veins that drain the brain and spine are blocked. It has been shown to have an association with MS in Zamboni's research, Zivadinov's BNAC study, and the Beirut study, among others.

* Many people who have been treated for CCSVI have had relief of symptoms such as severe fatigue and cognitive fog that have been attributed to MS. These symptoms may instead be symptoms of venous blockage, similar to what is seen in superior vena cava syndrome.

* CCSVI can co-exist with the autoimmune theory of MS. It may be that endothelial changes, due to the CCSVI-induced reflux, allow a weakening of the blood-brain barrier, an increase in the number of adhesion molecules, and the travel of leukocytes across that barrier.

* There are 500,000 people in the United States with MS. It is a disabling disease that strikes young people, primarily women, during their prime.

* Venous blockages such as CCSVI can be treated through a minimally invasive procedure known as venous angioplasty. Angioplasty has been in common use for over twenty years and is considered safe and effective.

* We have MS, we are suffering, and we deserve to have such a lead as this, based on peer-reviewed scientific findings, be fully explored.

Do not use the more scientific-sounding bullet points if they seem like too much! The biggest one is the last one. We are suffering and we will continue to suffer and we deserve relief from this suffering.

The pharmaceutical companies are not going to fund CCSVI, the MS Society has shown reluctance, and private funding is a terrible burden for all of us and our supporters to carry. The NIH funding can make a difference in what research goes forward. And we can make a difference by writing our letters. There are so many of us, which is a terrible thing, I wish none of us had MS. But because there are so many of us, we have that strength in numbers. Let's do this.

Boiled down points:
* I have MS (or someone I love does)
* I have CCSVI (or someone I love does or I suspect that I do because of the association between MS and CCSVI.)
* I am asking for research into CCSVI in MS to be funded.

******************************************************

I could use some help sorting out these addresses, some of them may not be right, I came across contradictory information on who the Director of NIH is. EDITED TO ADD: the director of NIH is definitely Francis Collins, who is listed first below. Here is what I have but please add and correct as needed. I wanted to post this now, because I am angry about the difficulty our researchers have had obtaining funding.

Francis Collins, MD, PhD
Director, National Institutes of Health
One Center Drive
Building 1, Room 126
Bethesda, MD 20892
collinsf@mail.nih.gov
ACCURATE

Story C. Landis. Ph.D.
Director, NINDS (National Institute of Neurological Disorders and Stroke)
Building 31, Room 8A-52
31 Center Drive
Bethesda, MD 20892
E-mail: landiss@ninds.nih.gov
Phone: 301-496-9746
ACCURATE

The U.S. Department of Health and Human Services
Office of the Secretary
Secretary of Health and Human Services, Kathleen Sebelius
200 Independence Ave., S.W. Room 615-F
Washington, DC 20201
Kathleen.Sebelius@hhs.gov
Fax: 301-496-0296
ACCURATE

The U.S. Department of Health and Human Services
Office of Public Health and Science
Regina M. Benjamin, MD, MBA
200 Independence Ave., S.W. Room 716-G
Washington DC 20201
email needed
ACCURATE

American Medical Association
Richard F. Corlin, MD, President
515 N. State Street
Chicago, IL 60610
richard_corlin@ama-assn.org

Mayo Foundation for Medical Education and Research
Michael B. Wood, MD, President
200 First St. NW
Rochester, MN 55905
newsbureau@mayo.edu

Public Advocacy Groups:

Center for Science in the Public Interest
1875 Connecticut Ave., N.W. Suite 300
Washington, D.C. 20009
cspi@cspinet.org

Public Citizen California Office
1615 Broadway, Ninth Floor
Oakland, California 94612
California@citizen.org

Public Citizen
Health Research Group
Sidney Wolfe, MD, Director
1600 20th St. NW
Washington, DC. 20009
hrg1@citizen.org

Here is a link to NIH Director Dr. Francis Collins bio and picture:
http://www.nih.gov/about/director/index ... rspectives

Deputy directors at NIH:
Lawrence A. Tabak, D.D.S., Ph.D.—Principal Deputy Director, NIH
Kathy Hudson, Ph.D.—Deputy Director for Science, Outreach, and Policy
Michael Gottesman, M.D.—Deputy Director for Intramural Research
Sally J. Rockey, Ph.D.—Deputy Director for Extramural Research
Colleen Barros, M.A.—Deputy Director for Management and Chief Financial Officer
James M. Anderson, M.D., Ph.D.—Deputy Director for Program Coordination, Planning, and Strategic Initiatives
http://www.nih.gov/about/leadership.htm
Last edited by Cece on Tue Feb 22, 2011 9:26 pm, edited 6 times in total.
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Postby HappyPoet » Tue Feb 22, 2011 8:12 am

Cece, you're a master with letter-writing campaigns. When you get riled up, you're a force to be reckoned with which is a wonderful trait -- I will definitely participate. Thanks for the excellent talking points and for including the email addresses.

:D
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Postby Cece » Tue Feb 22, 2011 9:25 pm

Thank you, HappyPoet.

Before I wrote up my post, I googled NIH and letter writing campaigns. Advocacy organizations for fibromyalgia, AIDS, and psoriasis have all organised similar letter-writing campaigns. The fibromyalgia site was wonderful, it had this for letter-writing advice:
www.fmnetnews.com/resources-advocacy-letter.php
and this for advocacy links for addresses of political officials in each state:
www.fmnetnews.com/resources-advocacy-links.php
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Postby MegansMom » Wed Feb 23, 2011 4:50 am

One letter written and sent, 9 more to go !

Thanks for the great idea.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Cece » Wed Feb 23, 2011 10:06 am

Thanks, MegansMom, I am glad to hear it.

I am a believer in what writing letters can do. It's so simple yet effective at getting our voices out there. Back in college, I ran the college chapter of Amnesty International, there were a lot of terrible stories about what happens to political prisoners out there, but there were also stories of people being released. That's my background here, anyway: I think we can make a difference, there are many ways to make a difference when it comes to CCSVI. Spreading the knowledge to others with MS. Supporting each other here through the whole process. Writing letters to the NIH and other organizations.

Funding is not exciting, but it is a necessity, it keeps coming up like a recurring theme. Dr. Dake and Dr. Mehta mentioned it, didn't they, in their CCSVI Alliance joint interview? Dr. Sclafani mentioned funding last June with the IRB hassle. Dr. Hubbard mentioned it in his new patient-centric registry materials. Dr. Zamboni's DREAMS project needs funding. Dr. Haacke was turned down for funding by the NIH and the MS Society after nearly always being successful in the past.

I've got a busy day today, I will not be able to go through all these addresses for accuracy until tomorrow, but I will get it done then. I've not yet written my letters, but I've got plenty to say. ;)
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