Morgellons Disease Newsletter

CEHF NEWSLINE


The Charles E. Holman Foundation

A Source for Morgellons Disease Information

NewsLine

May 2008, Volume 2

Introduction

Hello from The Charles E. Holman Foundation. Thank you all for your continued support. Because of all of you, we have accomplished some of our goals. We have had a very busy winter and spring and would like to share our recent activities and current projects with you.

Recent Events

The First Annual Conference on Morgellons was held in Austin, TX on March 29, 2008

Click link below to view Morgellons Conference Photos

http://picasaweb.google.com/lymesf/MorgellonsConference .

We thank our guest speakers for making this a very interesting and educational event. Thank you to those who attended. Whether you were there in person or in spirit, we thank you for helping us make this conference a huge success. Be sure to visit our website for a summary of topics that were covered. Click Here.

Thank you all for your generous contributions.

The entire conference was recorded and this 2 DVD set is available for purchase on our website. Any proceeds from the DVD sales will go directly to research.

Research Funding:

Research funding remains our primary goal. We are continuing on a mission to raise enough to provide a salary for a qualified scientist to assist Dr. Wymore in his lab. Please help us reach this goal. Donations are tax deductible and can be made to our organization or directly to OSU-CHS. We need your help and encourage you to contact us if you have ideas for fundraising in your area.

Recent Morgellons in the Media:

CDC / Kaiser Permanente Announce Morgellons Investigation

Airdate: January 16, 2008

http://thenmo.org/CDC11608.htm

Inside Edition

Inside Edition

http://www.insideedition.com/news.aspx?storyid=1315

Thank you to Inside Edition and to those who participated in the filming of the segment on Morgellons.

Research Brings Hope to Morgellons Patients

Airdate: March 31, 2008

http://cbs11tv.com/health/Morgellons.Disease.Morgellons.2.689110.html

Thank you to Stuart Boslow and staff at CBS11 for continuing coverage of Morgellons Disease.

Public Health Alert:Article on Morgellons Conference. Thank you PHA staff!

June 2008 Issue

http://www.publichealthalert.org

Look forward to future Morgellons in the media:

Self Magazine will be publishing an article on Morgellons later this summer.

Discovery Health has completed all day filming for a segment to be aired later this summer

Registrations:

If you have not yet registered with OSU's data base, please take a moment to do so. A registration button is located at the top, right corner of the home page at www.TheNMO.org and you do not need to donate anything in order to register. All of your information is confidential and is protected by Federal HIPAA regulations.

Morgie of the Month:

We want to hear from you even if it’s just to vent. We understand your frustration with Morgellons. If you would to share your story, please send your story along with one or more photos to morgiemonth@thenmo.org

Contact Us

If you would like to have one of our new tri-fold brochures on Morgellons, please send a legal size, self addressed stamped envelope to:

The Charles E. Holman Foundation

P.O. Box 92674

Austin, Texas

78709

If any of you would like to recieve this newsletter directly by email, or if you have information that you would like to be included in our newsletter, please send an email to Info@theCEHF.org

We welcome your experiences and topics.

Thank you all for your continued support.




NewsLine

November 2007, Volume 1

Introduction

The Charles E. Holman Foundation is a non-profit organization supporting recognition and research of Morgellons Disease. The organization was founded in August, 2006 by the former Chairman/Board of Directors of the Morgellons Research Foundation, Charles E. Holman. This organization began as a grassroots activist organization but has rapidly developed into a multi faceted group dedicated to the support scientific research, medical education, and patient support. We have 501 ( c ) 3 tax deductible status filed with the IRS in the state of Texas.

In Memorium

The untimely death of Charles Holman, one of the founders and Chief Operations Officer of The New Morgellons Order , on September 6, 2007 has saddened us greatly. He was not a patient with Morgellons but began his mission in an effort to help his wife, Cindy Casey, who is a Morgellons patient. Charles quickly became an advocate for all Morgellons patients and worked diligently at the many tasks he assumed. Charles' compassion, determination, and creativity is evident on his website at http://www.theCEHF.org . This website provides accurate scientific and medical information while supporting patient values. As an activist group, we are dedicated now more than ever to carry on Charles' mission.

Those of us fortunate enough to know Charles have suffered a huge loss. The entire Morgellons patient community has lost one of our strongest advocates. To honor and memorialize Charles, we have changed the name of our group to the Charles E. Holman Foundation. Our mission remains the same.

Charles wife, Cindy, is grateful to her "adopted" family, the Morgellons community, for the many kindnesses extended to her during this time of overwhelming grief. Many of you may remember the old Cherokeechas.com back when Charles and Cindy became Morgellons activists. Their relationship was special, as was evident to all in "Cindy's Diary" written by Charles to document Cindy's illness and her struggle in getting medical interest.

We are extremely grateful to those who have made generous donations to Oklahoma State University's Center for the Investigation of Morgellons in memory of Charles.

Recent Events:

October 27th and 28th 2007

Morgellons information booth at the recent ILADS (International Lyme And Associated Disease Society) conference in Boston, MA. Morgellons was very well received by this group of physicians as many of them are aready seeing Morgellons patients in their practice.

We distributed lots of informative info on Morgellons including tri-folds, CD's, and the recently published, peer reviewed article written by Ginger Savely, FNP-C and Raphael Stricker, MD. Randy S. Wymore, Ph.D., Director of Research at the Center for the Investigation of Morgellons at Oklahoma State University-Center for Health Sciences, provided a poster of his findings which we proudly displayed at our booth.

A Boston news crew filmed our booth and interviewed Dr. Greg Smith, Ginger Savely, FNP-C, and myself for an upcoming segment on Morgellons.

The ILADS and LDA (Lyme Disease Association) lectures were fantastic. Some of my favorites were Dr. Cameron's lecture on Evidence Based Medicine, Dr. Bransfield's lecture on psychotropic medication, and Dr. Martz which included the mystery of Morgellons. Of great interest was a debate between ILADS and IDSA guidelines in the diagnosis and treatment of Lyme Disease. Dr. Stricker moderated much of the event and the presidency was handed off to Dr. Daniel Cameron.

A wonderful reception was held for the new members as well as several mini-receptions held by the exhibitors. I am proud to be a new member of ILADS and I am grateful to be a part of this organization who still believes that it is really "all about the patient".

The Charles E. Holman Foundation had the opportunity to network with many other support groups and organizations that promote patient support and medical education. We feel this endeavor was a huge success and are eager to promote further education and support systems from all the wonderful contacts.

We have many photos and more info on this exciting event with which we hope to soon update the website. Thank you to everyone who worked so hard to make this possible. A very good time was had by all and the learning experience was invaluable.

Thank you everyone!

Cindy Casey, RN

Research Updates

The scientific research at Oklahoma State University's Center for the Investigation of Morgellons continues to expand.

The Center for the Investigation of Morgellons is looking at all aspects of this disease. The primary approach, as with all unknowns, is from an Infectious Disease standpoint. Hundreds of anonymous samples have been submitted for cultures for consistent bacteria and fungus. Cultures are still in progress. These cultures are not just from fibers, but from lots of specimens of a variety of body fluids, tissue biopsies, etc. The first part of any infectious disease research is to rule out any etiology known bacteria or fungal infections. Many other diseases have been proven to be difficult to culture so it's still a possibility that this could yield some results. PCR (Polymerase chain reaction) testing for a multitude of pathogens is also being implemented. Again, these anonymous specimens include skin scrapings, body fluids, and tissue biopsies which are collected by medical professionals in a medical setting. The mass spectrometry to determine the chemical composition and properties of the fibers is yet another aspect of the research.

Tax deductible donations can be made to the research at the Center for Investigation of Morgellons by clicking the Oklahoma State University Donation button at www.TheCEHF.org


Scientific Research at SUNY, Stony Brook NY

Recent scanning electron microscopy has shown some incredible features of the fibers involved with Morgellons. We eagerly await publication of these very interesting images. FTIR (Fourier Transform Infrared Spectroscopy) and Raman Micro spectroscopy have been performed. Many of you are aware of Dr. Citovsky's work in agrobacterium as a possible association with Morgellons Disease. Please visit This Page for more information on agro bacterium.

Tax deductible donations to this research by emailing ccaseyrn@hughes.net

Recent Morgellons in the Media

October 24th, 2007

Peer reviewed article published in Expert Review in Dermatology: Expert Review of Dermatology

Oct. 2007 , Vol. 2, No. 5, Pages 585-591

http://www.future-drugs.com/doi/abs/10.1586/17469872.2.5.585

Aug 6th 2007

Dermatoscope in the media: Filmed at OSU-CHS

Comment from Charles:

Dr. Randy Wymore, Dr. Rhonda Casey & Cindy Casey, RN, are all interviewed. BTW - my lovely wife Cindy will be the one wrapped in the throw away hospital gown... this, after days of trepidation over "..the perfect outfit for the TV interview".

Video and text:

http://cbs11tv.com/topstories/local_story_218170655.html

Upcoming Morgellons in the Media

The dates for upcoming media to be aired will be announced as soon as we have them. We anticipate news pieces airing in Oklahoma City, OK area and Boston, MA as interviews have been done. We are also eager for an upcoming article in the Washington Post. Discovery Channel is also working on a Morgellons project which will be announced as soon as we have information.

Registrations:

The registration process is important. It gives researchers information on the geographical and other epidemiological aspects of Morgellons Disease. If you have not yet registered with OSU's data base, please take a moment to do so. A registration button is located at the top, right corner of the home page at http://www.theCEHF.org and you do not need to donate anything in order to register. All of your information is confidential and is protected by Federal HIPAA regulations.