MRF June Newsletter

[pez1103]

MRF
Morgellons Research Foundation
PO Box 10353
Pittsburgh, PA 15234-9998
www.Morgellons.org


June 2007

Dear MRF registrants:

We have several good things to tell you. First, we would like to thank each of you for all of the hard work you have done contacting politicians and also for remaining strong and hopeful.

1.
Promising Research Opportunity:
One of the country's most renowned biomedical research institutes has submitted a research proposal to the MRF. The research would focus on uncovering the differences in the blood of people with Morgellons and those who do not have the disease. The short term goal of the research is to identify markers that would allow us to diagnose Morgellons disease. The long term goal is aimed at using these markers to understand the cause of the disorder itself. The cost of this research project would be $233,000 for one year.

This research is extremely important. This research institution has the most advanced technology available in the world and some of the country's leading researchers. We are very fortunate that they have taken an interest in Morgellons disease. This would be the first Morgellons research project that focuses on the blood of patients. Unfortunately, this type of research is very expensive.

Please donate to this and other research projects if you are able, and ask your friends and family to also join in the effort. If you wish for your donation to be used for scientific/medical research only, please designate in the memo portion of your check, or on paypal, that funds are for the "MRF Research Campaign." 100 percent of these funds will go towards research.

To donate, please go to: http://www.morgellons.com/contributions.htm

Also, please use www.goodsearch.com when you search the web, or use www.igive.com when you shop online, and designate the Morgellons Research Foundation as your charity of choice. Both of these websites provide contributions to charities, which allow you to contribute without spending a dime.

Although we are encouraged by the announcement that the CDC will soon be conducting an epidemiological investigation of Morgellons disease, we realize that this is just an early step in a long process to find the cure for this disease. We hope to circumvent many of the roadblocks to the cure by enlisting the help of multiple, highly motivated researchers. Multiple research projects, like the project mentioned above, are crucial to help us move quickly toward our goal of the cure for Morgellons disease. We will only accomplish this goal if researchers, both in and outside of government agencies, all work together as quickly as possible.

Your combined donations, along with our continued effort to enlist the help of philanthropists, will help us reach our goal of a cure for Morgellons disease.

2.
Ongoing Research:
Last month, another researcher from a major university contacted the MRF to find out how he could get involved, and he was provided with samples to analyze. We are currently working with researchers at three major universities and a microbiologist at a private lab. These four groups of researchers are examining the chemical composition of the fibers and also examining them microscopically. In addition, DNA analysis is being performed on specimens. No conclusions have been reached so far from this research. We will post any and all new information about research findings on our website, and will also email the information to you, as part of our newsletter updates. We want to thank all of these researchers for their dedicated efforts.

The funding of scientific research continues to be a major priority for the MRF. The MRF has provided "start up" funding to researchers at three U.S. universities, and we have recently received two new grant applications from other researchers. The MRF, which is operated by a non-salaried volunteer board of directors and officers, will continue to give research grants to new researchers as we are able.


3. MRF currently accepting grant applications:

The MRF has established a formal grant application process, so if you know of any scientists who are interested in researching Morgellons disease, please have them submit an application. The MRF Research Grant Program information is available here:

The MRF Research Grant Program http://www.morgellons.org/Grant%20Intro.htm

4. Advocacy:
Your hard work is paying off. We have learned that the CDC has received more inquiries about Morgellons disease than any other issue in the history of the agency. The CDC has also received dozens of letters from US Senators and Representatives. This is due to the efforts of registrants like you.

Due to these efforts, the CDC has recently placed information about Morgellons disease on their website:
CDC Morgellons webpage: http://www.cdc.gov/unexplaineddermopathy

Please continue to send your letters! Check out the advocacy government page on our website for sample letters to the CDC, the Department of Health and Human Services, and your senators and representatives. Ask your friends and family to join in this effort. Now, more than ever, we need to continue to do what we can to move this investigation forward. We will let you know when we learn the actual start date of the CDC Morgellons investigation, and any other important details of the investigation.

Members of the MRF and sufferers have met with legislative aids from various senators offices in the past several months. We are grateful to everyone who participated in these meetings. We maintain regular contact with several influential senators' offices that have been most helpful and kind.

5.
Please ask for your own update on the CDC investigation:
Call the Washington DC office of your US Senators and ask to speak to the health legislative aide. (You can find the phone number for your US Senators' Washington DC offices at www.senate.gov.). Please tell them we have been waiting for over a year for the CDC to start this investigation and ask for an update. This accomplishes several things. It will provide you with the latest information on the investigation and will show continued public concern about Morgellons disease.


6.
Morgellons Patient Data:

The MRF has helped fund the collection and collation of laboratory data, as well as demographic, history and physical information from 25 Morgellons patients, who were examined by two physicians. We will share information from the analysis of this data with you when the final report of this data is complete.

7.
Newsletter Maillist
We regret that not everyone on our registration database receives our newsletter. Unfortunately, many newsletters are blocked by SPAM filters and other security features over which we have no control. We are doing everything we can to try to resolve this issue. We will continue to post our latest newsletter to our website, so please check our newsletter page periodically.


Thank you again for all of your help and determination!

William T. Harvey, M.D., M.P.H., M.S., Chairman
Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director
Janelle Fossen, Secretary
Dale Cowher, CPA, Treasurer
Roy Houchins
Board of Directors
Ken Cowles, Director Media and PR
Morgellons Research Foundation





Morgellons Research Foundation
PO Box 10353 - Pittsburgh, PA 15234-9998 USA

[pez1103]

thanks

[carla]

Pez I received mine.I am already registered with them.
The most enquirys than any other subject in cdc history .
And we are still waiting for a positive response. But at least someone credible is researching it. carla xxx

[pez1103]

Thanks Carla. There are several credible researchers looking into this, but only part time since there is so little money for research.

However, if we want this particular biomedical institute to look at the blood of Mg, we need to raise the money first. It would just take 2330 people with $100 each. It's an enormous undertaking for us to raise this much; it can only happen if we all join in and we reach out to other people who may be willing to help.

The sooner we can raise it, the sooner they can get started.

[hummingbird]

pez - I am registered, but have never received a newsletter. How do I change this?
hummingbird

[pez1103]

Hummingbird - I PM'd you.