MRF Board Members

Morgellons Research Foundation
Board Members

Board of Directors

  • 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
  • Louise Mandrell

 


Medical Advisory Board

  • William T. Harvey, M.D., MPH
  • Geoffrey S. Ames, M.D.
  • Robert C. Bransfield, M.D., DFAPA, PC
  • Bradley Hope, M.D.
  • Jed H. Horowitz, M.D., FACS
  • Rebecca Ricchi, RN, ARNP
  • Todd M. Warden, M.D.

 


Scientific Advisory Board

  • Andrew Bohm, Ph.D.
  • Kenneth A. Curr, Ph.D.
  • Ahmed Kilani, Ph.D., MT( ASCP)
  • Joseph A. Price, Ph.D.
  • Cynthia A.Villarimo, Ph.D

 


Nursing Advisor

  • Barbara Johnson, BS, RN

 


Director of Media and Public Relations
Candice Han

Contact

Contact Us

The Morgellons Research Foundation
PO BOX 357, Guilderland, NY 12084-0357
contactus@Morgellons.org

The Morgellons Research Foundation cannot offer medical diagnoses or treatment recommendations. The MRF is run solely by unpaid volunteers. We cannot accept samples from patients. Occasionally, researchers who are investigating Morgellons disease at their university or private labs do need additional samples, but these samples must be collected by a physician.

If you are able to become an advocate or volunteer, please see the Advocacy/Volunteer page for more information.

Members of the media, please contact Candice Hahn, MRF Director of Media and PR at: Media@Morgellons.org

contributions

contribute1Thank you for your support!

The Morgellons Research Foundation is designated by the IRS as a non-profit 501(c)(3) organization. Donations to The Morgellons Research Foundation are tax-deductible to the full extent of the Internal Revenue Code, and will help us to continue to raise awareness of this disease, as well as to fund critical research.

Six groups of PhD level scientists have submitted formal research proposals to the MRF, totaling $581,600. These dedicated researchers, who work at three different universities, two private microbiology laboratories, and one research institute, require funding to continue their investigations of Morgellons disease.

Please consider making a contribution.

Contributors to the MRF will receive a written receipt which can be used for tax purposes. The ultimate goal of this foundation is to find a cure for Morgellons disease.

Donations, in the form of checks payable to Morgellons Research Foundation, can be mailed to:

Morgellons Research Foundation
PO BOX 357
Guilderland, NY
12084-0357


Contribute without spending a dime! Learn more >>>

There are several ways to add to your contribution without spending a dime!

iGive.com
eBates.com
GoodSearch.com


Thank you to our sponsors. Learn more about our wonderful sponsors >>>

On behalf of everyone suffering from Morgellons disease, we would like to thank these organizations and individuals for their kind support of the efforts of the Morgellons Research Foundation.

Maria Lucas and the Asthma & Respiratory Services
SCORE
National Hot Rod Association (NHRA)


Where do donations go?

The MRF is operated by an unpaid board of directors, officers, and volunteers who are working out of their homes. The MRF has minimal operating costs and the current Board of Directors has always paid for their own travel and related costs associated with Morgellons disease. We operate this way so that the bulk of our donations go to raising awareness and supporting scientific research.


iGive.com
Please use iGive.com when you shop online and designate the MRF as your charity of choice. You can shop as you normally would and a percentage is donated to charity. The prices aren’t any higher than you would normally pay. In fact, they often offer discounts.

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eBates.com
Another organization that contributes to charity is eBates.com. Again, shop online and designate the MRF as your charity of choice. Shop as you normally would and a percentage is donated to the MRF. The prices aren’t any higher than you would normally pay and often offer discounts.

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GoodSearch.com
You can also search the web using Good Search (click the button below). Every time you search the web, a small amount goes to the MRF. It uses Yahoo as the search engine, so it works great.

GoodSearch: You Search...We Give!

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Thank you to our sponsors.
Maria Lucas and the Asthma & Respiratory Services

Thank you to Maria Lucas and everyone at Asthma and Respiratory Services of Oklahoma, for their generous contribution as well as their support.

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American Association of Critical Care Nurses
Thank you for your generous sponsorship of the MRF at the Bridges Symposium in San Francisco. Your kindness will never be forgotten.

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SCORE
Thank you to SCORE. We would like to also personally thank Bob Checkaneck of SCORE for all of his advice, patience and guidance. Click here for SCORE letter, awarding MRF Small Business Success 2006.

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National Hot Rod Association (NHRA)
Thank you to the NHRA for their help in raising awareness of Morgellons disease, during the National Hot Rod Association (NHRA) Races in Pomona, California.

With a special thank you to David Baca, who was the first NHRA Driver to volunteer to help raise awareness of Morgellons disease, by driving with MRF information on his car, in honor of a friends’sister-in-law Deanna, and her loving and supportive sister Terri.

We would also like to thank the following drivers for their help in raising awareness of Morgellons disease, by racing with MRF information on their cars, during the 2006 races in Pomona, California.

Clay Millican – Werner Enterprises Top Fuel car
Garrett Bateman – Big O Tires A/Fuel car
Kenny Koretsky – Nitro Fish Pro Stock Car

The kindness of the drivers of the NHRA has meant so much to so many people!

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volunteer

volunteer1Advocacy/Volunteer

Welcome to the MRF Advocacy Coalition
The Morgellons Research Foundation is working diligently to accomplish the goals of the MRF: raising awareness of Morgellons disease and increasing funding for research. Please help us help you, your loved ones, or people whose lives have been affected by this illness.

Together, we can make a difference.
Here are some of the ways you can help:

1. Register with the MRF. .
This allows us to attempt to track the number of people who are suffering from the disease, learn what symptoms they have, and what parts of the country/world are most affected. Congress pays attention to these numbers. All information will be kept confidential.


2. Contact Congress.
Ask ten additional people to do the same.

The fastest way to send the following letter to Congress is via FAX. Postal mail is also effective, but is a much slower process due to government mail screening. Your representatives’ contact information can be found at:

www.senate.gov
www.house.gov

Click here for a sample letter to Congress.


volunteer2

 

3. Contact President Obama.
Ask ten additional people to do the same.

Information about contacting president Obama can be seen below. This letter (or your version) can be sent via the following two Whitehouse website contact forms, faxed or mailed to the President. We recommend faxing over mailing since postal mailings likely pass through a lengthy security screening process.

Whitehouse Fax number: 202-456-2461
Whitehouse Main Office website form
Whitehouse Public Liason Office Website form

Click here for a sample letter to the President.


4. Please consider volunteering your time to help us.
We are trying to help over 13,000 families whose lives have been affected by this illness. We are a grassroots organization with all-volunteer officers, board members or staff. We do have human compassion, drive, and dedication. But we need help! We have a tremendous need for volunteers able to assist us in some critical need areas, including those below.

Critical Needs:

Please email Advocacy@Morgellons.org if you can help in one of the following ways:

A. Clinicians: If you are a physician, or other clinician and feel that you could help us in any way, please contact us. We are in need of clinicians willing to accept patients suffering from this illness.

B. Fundraising. We hope to raise appropriate funds to support the five (5) research grant proposals sent to us by PhD level scientists, which will speed the discovery process.

C. Professionals. We would like to hear from professionals capable of helping in any way.

D. Scientists. We would like to hear from scientists able to investigate any aspect of this illness.

 

case

The Medical Advisory Board of the Morgellons Research Foundation (MRF) developed a Case Definition, the most recent revision of which is currently nearing completion. Until this more rigorous definition has been submitted for review, the much earlier case characterization (seen at bottom) will remain in place.

Following is the history of the MRF’s attempt to understand Morgellons disease.

 

Morgellons Disease is a label assigned by the founder of the MRF to the condition of an ill child in 2002 with numerous symptoms outside known illness categories. One physical sign became the “defining” characteristic of the illness: small diameter “filaments” protruding from lesions near the child’s mouth and other body areas that were both sensitive and painful.  In searching for others who might have encountered the same phenomenon, the MRF was created. Its initial function was to convey details of the phenomenon to others, and simultaneously provide a central registration site to foster broader communication.

 

Although the initial attention of the MRF focused on filaments and movement, awareness of the other symptoms increased which broadened the presumed boundaries of the illness.  This illuminated the possible degree of disability of those afflicted and made clear that Morgellons disease likely extended far beyond the “filaments” and dermal movement sensations, to include numerous other organ system effects. Initially the name Morgellons disease was only a rallying point for self-diagnosed people to compare symptoms and experiences. With time, the number of registrants and the magnitude of their data reached a level that revealed a more consistent pattern, and although virtually all remained self-diagnosed, more than one hundred physicians contacted the MRF about patients with similar symptoms. In addition, physicians,  veterinarians, dentists, nurses, and other medical professionals contacted the MRF about their own illness, or about the illness of family members.
The first attempt to pool and characterize Morgellons data into a consistent pattern was made by a physician member of the MRF who evaluated information collected from fifty people who self-referred from the MRF site to a single medical clinic. It was noted that many of these patients had been previously diagnosed with a common medical label, Delusions of Parasitosis (DP), the basic tenet being this is a psychiatric illness with the presumption of a purely delusional “parasite infestation.” It was already clear by the time the first dozen patients had been extensively examined physically that they did not fit under that diagnostic label. All had evidence of actual parasite infestation, including comparison of typical skin lesions, onset history, sequence of organ system involvement, and expected organ pathology. The “filaments” were consistently observable and collectible, and laboratory data was collected on all, supporting an irrefutable immune deficiency state, chronic inflammation, and a complex picture of autonomic abnormalities. Medical histories clearly support that most symptoms of Morgellons disease precede emotional effects. Thus, it appears that Morgellons and DP are different illnesses.
Many clinicians sought out initially by patients, although formally trained and licensed, based their conclusions on the presumptions of others who had made the same presumptions in the 57 DP-titled papers in the NLM database from 1956 through 2007. Although some patients did find clinicians willing to help them, many patients reported feeling abandoned by physicians unwilling to investigate their illness. These patients tried valiantly to find a modicum of relief in the face of an otherwise ineffective medical system, and some became the target of fringe groups who occasionally promoted ineffective treatments for economic benefit.
The MRF chose to display the following clinical characterization from 2005, which has since been revised, of Morgellons disease. We know well that Morgellons disease has no formal Case Definition. However, all new definitions of human disease begin with patient observations and collected data. As the number of patients we have temporarily labeled Morgellons has grown in consistency and, counter to the DP concept, we present below a collation of all information collected from Morgellons patients until mid-2006 to create a MRF characterization of the illness. The following subsequent step will be a fact-based Case Definition.

 

THE MRF 2006 MORGELLONS DISEASE CHARACTERIZATION:

The Following Signs or Symptoms are The Basis of Morgellons Disease as defined by patients that fit within a consistent boundary that is also outside the boundary of other “known” diseases. The initial three characteristics parallel a much more entrenched illness, Delusions of Parasitosis (DP) named decades before today’s laboratory technology and infection/immunity knowledge, driven by HIV, developed. The more recent findings listed below provide a far broader and more consistent evidence base, strongly supporting the likelihood that DP is a prematurely assigned label to an organic, rather than purely psychiatric disease.

1. “Filaments” are reported in and on skin lesions and at times extruding from intact-appearing skin. White, blue, red, and black are common among described fiber colors. Size is near microscopic, and good clinical visualization requires 10-30 X. Patients frequently describe ultraviolet light generated fluorescence. They also report black or white granules, similar in size and shape to sand grains, on or in their skin or on clothing. Most clinicians willing to invest in a simple hand held commercial microscope have thus far been able to consistently document the filaments.

 

2. Movement sensations, both beneath and on the skin surface. Sensations are often described by the patient as intermittently moving, stinging or biting. Involved areas can include any skin region (such as over limbs or trunk), but may be limited to the scalp, nasal passages, ear canals, or face…and curiously, legs below the knees.

 

3. Skin lesions, both (a) spontaneously appearing and (b) self-generated, often with pain or intense itching. The former (a) may initially appear as “hive-like”, or as “pimple-like” with or without a white center. The latter (b) appear as linear or “picking” excoriations. Even when not self-generated (as in unreachable regions of babies’ skin), lesions often progress to open wounds that heal incompletely (e.g., heal very slowly with discolored epidermis or seal over with a thick gelatinous outer layer.). Evidence of lesions persists visually for years.

4. Musculoskeletal Effects and Pain is usually present, manifest in several ways. Pain distribution is broad, and can include joint(s), muscles, tendons and connective tissue. Both vascular and “pressure” headaches and vertebral pain are particularly common, the latter usually with premature (e.g., age 20) signs of degeneration of both discs and vertebrae.

5. Aerobic limitation is universal and significant enough to interfere with the activities of daily living. Most patients meet the Fukuda Criteria for Chronic Fatigue Syndrome as well (Fukuda, Ann. Int. Med., 1994). Cardiology data and consistently elevated heart rates suggest a persistent myocarditis creating lowered cardiac output that has been partially compensated for by Starling’s Law.

6. Cognitive dysfunction, includes frontal lobe processing signs interfering with logical thinking as well as short-term memory and attention deficit. All are measurable by Standard Psychometric Test batteries.

7. Emotional effects are present in most patients. Character typically includes loss or limitation of boundary control (as in bipolar illness) and intermittent obsessional state. Degree varies greatly from virtually absent to seriously life altering.

OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS

1. Shifting visual acuity. Unexplained frequent need to change glasses prescription, perceived changes in visual field, and scattered and changing level of perceived light intensity.

2. Numerous neurological symptoms and clinical findings. A variety of neurological symptoms and signs have been reported.  Common physical findings include abnormal Romberg, peripheral neuropathy in ALL (feet, and in some cases fingers), abnormal reflexes, verifiable, probably neuropathic pain and recurrent brain control abnormalities affecting motor function, circadian rhythm, body temperature and respiratory rate.

3. Gastrointestinal symptoms, often including dyspepsia, gastroesophageal reflux, swallowing difficulty, and changes in bowel habits (Similar to IBS or Crohn’s disease)

4. Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with irregular texture and hyper- OR hypo-pigmentation pattern. Overgrowth or hypergrowth phenomena are common (nevi, skin tags, microangioma, lipomas, callus formation).

5. Arthralgias. Frequently reported, although arthritis is not. Common joints are in fingers, shoulders, knees and vertebrae.

COMMON LABORATORY ABNORMALITIES

Elevated cytokines: TNF-alpha, IL-6, TGF-beta; elevated inflammation markers: C-reactive protein and TNF-alpha; Immunodeficiency markers: low CD 56 or CD 57 number, low C1Q, low IgG subclasses 1 and 3; hematological abnormalities: low hemoglobin and hematocrit with abnormal RBC indices; and biochemical abnormalities: elevated blood glucose, insulin, calcium, and serum Homocysteine, and low serum potassium and magnesium.

The consistent finding of numerous unexpected biologic agents at atypically high levels (some thought to be non-pathogens, others definitely pathogenic) strongly supports that an immune deficiency state exists in Morgellons patients. Agents identified serologically include many zoonoses (intermittently and in low numbers) such as Borrelia (at least five species) and Babesia, a single recently found gram negative bacterium, most herpes viruses, some strongly activated such as VZV and HHV-6, several mycology species (esp. Tineas), and particularly in those we have labeled Morgellons patients, parasites (species will be elaborated following PCR sequencing).

 

publications

Savely, VR, Stricker, RB, Morgellons Disease: the Mystery Unfolds
Expert Review of Dermatology
2007, Vol. 2, No. 5, Pages 585-591


Psychiatric_News_Image

Bransfield, RT, Morgellons Disease (Letter to the Editor)
Psychiatric News. 

2007; 42; 11, page 24

jaad

Harvey, WT. Morgellons disease.
J Am Acad Dermatol. 2007;56:705-706.


psychology_today_logo_large

Psychology Today Magazine
March 6, 2007
The Morgellons Mystery


amjocd

American Journal of
Clinical Dermatology
2006, Volume 7, Issue
authored by:
Ginger Savely, NP,
Mary Leitao and
Raphael B. Stricker, MD

The Mystery of Morgellons Disease:
Infection or Delusion?


Adv-16

Advance For Nurse Practitioners – May 2005

National Nursing Publication’s
article on
Morgellons Disease
authored by:
Ginger Savely, FNP-C
and Mary M. Leitao


Case Definition Draft of Morgellons Disease

 

welcome

The Morgellons Research Foundation (MRF) is a 501(c)3 non-profit organization established in 2002 in honor of a two-year-old child with an unknown illness, which his mother labeled “Morgellons disease”.  The MRF is dedicated to raising awareness and research funding for this poorly understood illness, which can be disfiguring and disabling, and affects people of all age groups including an increasing number of children.  The number of families currently registered with the MRF is believed to represent a fraction of the true number of affected families.

The MRF fully supports the formal efforts by the CDC and Kaiser Permanente’s Northern California Division of Research to investigate Morgellons disease.  The MRF will continue to financially assist the ongoing efforts of private research scientists who are dedicated to solving the mystery of this tragic illness.

CDC Investigation:

The Centers for Disease Control and Prevention in conjunction with Kaiser Permanente’s Northern California Division of Research held a national media telebriefing on January 16, 2008 announcing government efforts to investigate the cause of this illness.  Follow this link for a transcript of the media telebriefing.

According to the CDC:  “Morgellons is an unexplained and debilitating condition that has emerged as a public health concern. Recently, the Centers for Disease Control and Prevention (CDC) has received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media regarding this condition.   Persons who suffer from this condition report a range of coetaneous symptoms including crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores) and some sufferers also report systemic manifestations such as fatigue, mental confusion, short term memory loss, joint pain, and changes in vision”

In Loving Memory of Ken Cowles

No part of this website may be reproduced without expressed written permission from the Morgellons Research Foundation.

National Suicide Prevention Lifeline

Morgellons

thank_you.htm

( Please see note below from John Fowler, Health & Science Editor KTVU TV)

 

To MRF Registrants:

 

We are sad to announce the passing of a good and kind human being, Ken Cowles.  Ken passed away peacefully in his sleep on October 24, 2007.

 

Ken was the Director of Media and PR for the Morgellons Research Foundation and worked extremely long hours for the cause.  He felt it was his calling to help all people with this devastating illness and he never waivered in his belief or his efforts. It is due to Ken’s determination and sense of right, that Morgellons disease has received so much media attention starting with KTVU in San Francisco and including ABC’s Primetime Live.

 

Ken learned about Morgellons disease six years ago from a woman with the illness who was living in Washington State.  She contacted Ken because she knew that he had worked with the media on other stories and asked him to consider helping our group.  She asked Ken to speak with people at the MRF for more information and he agreed.  After learning more about the illness and speaking with physicians who had patients, Ken reached out to his contacts in the media and asked for their help raising public awareness of the disease.

 

Below is the thank you to Ken that the MRF has had on the website for several months.  Those of us who knew Ken, loved him and will miss him.  Ken was a good man with a pure heart.

 

Mary Leitao

Morgellons Research Foundation

 

 

Thank you, Ken Cowles!

 

The Morgellons community would like to extend our sincere gratitude to Kenneth (Ken) Cowles, MRF Director of Media and Public Relations, for working diligently and consistently for six years to help all people with Morgellons disease. 

Although Ken does not have Morgellons disease, nor does anyone in his family, he has devoted an enormous amount of his personal time to help raise public awareness of the disease. Thousands of people with Morgellons disease have reported that they became aware of others with their illness only after seeing media coverage which Ken has coordinated over the years.  Ken’s contacts in the media led to the initial KTVU media report of Morgellons disease in March 2004. This initial report was the beginning of a public awareness campaign which Ken directed and devoted himself to daily.

 To Ken Cowles, we would like to say a sincere and heartfelt THANK YOU for caring about the plight of other people, and for a job well done!

 

Dear Mary-It is with profound sadness I write this note of condolence.  Ken was a beacon of moral, ethical and compassionate advocacy for so many people.  His perseverance and clear communication educated me and Sharon about Morgellons and spurred me in my own investigation.  His tireless voice on behalf of the
suffering will be missed by us and I’m certain by many thousands.  As we enter a new phase in the discovery about this illness, I feel compelled to dedicate ourselves in his memory.  My deepest personal condolences to you, for I recognize you lost a friend as well as colleague.
Very truly yours,
John Fowler
Health & Science Editor
KTVU TV
San Francisco-Oakland-San Jose