support group meeting in Tampa

[Sadsack]

The next Tampa Bay support group meeting has been moved up to SUNDAY JANUARY 18. The reason for this has to do with the anticipated CDC announcement sometime this month. It will be, once again, at the office of Dr. Reed at:
2605 W. Swann Street, Suite 100, Tampa, FL at 2:00 pm.
Please try to attend, and send this announcement to anyone else who lives in that general area. We MUST unite and organize.
It is not certain at this point, but it is anticipated that several interested doctors will attend the meeting as well. Some were at the first meeting, and it was fantastic to get medical allies in this horror.
Please help this cause by cross posting on other groups, such as Lymebusters (I am not a group member there), etc.
Thank you.
SS

[hilly]

Here are the details of the conference on Morgellons in Austin Texas. Looks to be very good.. wish I could go :<( Hilly

2nd Annual
Scientific/Medical Conference on Morgellons
"Searching for the UnCommon Thread"

DATE:
April 4, 2009

TIME:
8:00 AM - 5:00 PM

LOCATION:
Westoak Woods Baptist Church
Conference Room
2900 Slaughter Lane
Austin, Texas

SPONSOR: This event is being sponsored by the The Charles E. Holman Foundation/New Morgellons Order, a non-profit organization with IRS 501 (c) (3) status. Our all volunteer staff is dedicated to fundraising for scientific research and medical education, raising public awareness, and providing support for those who suffer with this unexplained illness.

WHO MAY ATTEND: Although much of the lecture content will be geared toward medical professionals and scientists, we encourage patients and supporters to attend as well. Our goal is an informative, educational and inspiring event that will be beneficial to all!

GUEST SPEAKERS:

Harriet Bishop, President, TXLDA
Austin, TX
Morgellons Patient
President of Texas Lyme Disease Association
Topic: "Staying Positive to Cope with Morgellons"
Rhonda L. Casey, D.O.
Tulsa, OK
Vice-Chair, Department of Pediatrics;
Clinical Director, Center for the Investigation of Morgellons Disease;
Assistant Professor of Pediatrics,
Oklahoma State University, Center for Health Sciences.
Topic: "Morgellons Observations in Pediatrics and Adults."
David Gibbs, MS, CDRP
Austin, TX
Social Security Specialist, Disability Claims Professionals of Texas
Experienced and successful disability representation for Morgellons and Lyme Disease
Topic: "Social Security Benefits as Related to Morgellons Disease"
Elizabeth Rasmussen, Ph.D.
Laramie, WY
Doctorate in Clinical Psychology, Author of "Debunking DOP"
Post-graduate training in microbiology and immunology
Board of Directors, Laramie Advisory Commission on Disability
Topic: "WANTED: Appropriate Treatment of Human Beings Who Happen to be Ill or Have a Disability"
Ginger Savely, DNP
San Francisco, CA
Completing her Doctorate in Nusing Practice at Case Western University (March 16, 2009)
Having seen over 300 Morgellons patients in her practice, Dr. Savely's experience has become world renown
Topic: "A Descriptive Analysis of 122 Patients with Visualized Subcutaneous Fibers"
Raphael B. Stricker, MD
San Francisco, CA
Sub-specialty training in internal medicine, hematology, and immunology
Board of Directors ILADS, International Lyme and Associated Diseases Society
Board of Directors CALDA, California Lyme Disease Association
Topic: "The Mystery of Morgellons"
Amelia M. Withington, MD
Chester, PA
Attending Psychiatrist at Crozer-Chester Medical Center in Chester, PA
Board Certified in Psychiatry and Neurology
Residency completed at Hahnemann University Hospital, Philadelphia, PA, 1995
Graduated U of TX Southwestern Medical School, 1991
Topic: "My Morgellons Experience"
Randy S. Wymore, Ph.D.
Tulsa, OK
Director, Center for the Investigation of Morgellons Disease;
Associate Professor of Pharmacology & Physiology
Oklahoma State University, Center for Health Sciences
Topic: "Research Update"
Special Musical Guests
Cliff Mickelson, guitar, vocals
Lee Mounger, bass, fiddle
HOW TO REGISTER: A completed registration form (click here to print form) is required in order to assure adequate seating and accommodations.
FEE: A tax deductible contribution of $25.00 per registrant is requested to help cover costs but is not required. We want everyone to have the opportunity to attend. Any proceeds from this event will be used to further education and research.
. Checks or money orders can be made payable to:
"The Charles E. Holman Foundation"
Mail registration form along with your tax deductible contribution (if applicable) to:
The New Morgellons Order/
The Charles E. Holman Foundation
The New Morgellons Order
P.O. Box 1109
Lone Star, Texas 75668
A confirmation of your registration will be mailed, faxed, or emailed to you depending upon your preference.
Coming Soon
Detailed program of scheduled speakers
Map of the area
Information on reception to be held on Saturday evening, following the conference
List of nearby hotels and restaurants
Questions
If you have any questions regarding this event, please send an email to admin@theNMO.org
We are excited with the announcement of this upcoming event and look forward to seeing you all there!


--------------------------------------------------------------------------------

[Sadsack]

Hilly -

I think the conference deserves its own thread! Of course, it is a couple of months away, so there will be plenty of time to start the thread and keep it active.
What a milestone this conference is. Last year it seemed the media paid little attention to it, only one local CBS affiliate ran a story about the conference, but not one media representative was present.
Paradoxically, when the summary of the conference was published online by Lorie Kramer, the number and kind of hits to view it were very telling:

Morgellons Conference Page Visitors

The tongue in cheek comments were made by Lorie, to whom the Morgellons community should be very grateful.

SS

[Sadsack]

The next Tampa Bay support group meeting has been moved up to SUNDAY JANUARY 18. The reason for this has to do with the anticipated CDC announcement sometime this month. It will be, once again, at the office of Dr. Reed at:
2605 W. Swann Street, Suite 100, Tampa, FL at 2:00 pm.
Please try to attend, and send this announcement to anyone else who lives in that general area. We MUST unite and organize.
It is not certain at this point, but it is anticipated that several interested doctors will attend the meeting as well. Some were at the first meeting, and it was fantastic to get medical allies in this horror.
Hope to see you there. There is strength in numbers!!!
SS

[hilly]

You're quite right Sadsack about the Austin conference needing it's own thread and I've done that ! Thanks. Hilly

ps Trouble is this thread and that knock each other out ... lol

[niecy]

Originally Posted by hilly

You're quite right Sadsack about the Austin conference needing it's own thread and I've done that ! Thanks. Hilly

ps Trouble is this thread and that knock each other out ... lol

Hey Hilly and Sadsack, I just thought I'd throw in that there was a thread created on Dec. 20th, 2008 about the 2nd Annual Morgellon's Conference.

Here's the link:
2nd Annual Morgellon's Medical Conference

Niecy

[Sadsack]

No problem, Hilly -
I'll bump it up again tomorrow!
SS

[Sadsack]

Don't forget the meeting tomorrow, Sunday, at 2 pm. Some important information will be discussed and we need you there!!!
SS

[jonsi]

I can't wait to hear the important information discussed in Tampa Bay. Please share results with us. Anything new????

~jonsi

[Sadsack]

Oh, Jonsi -
It wasn't new findings, it was a new initiative that we are kicking off in FL. It is based on what was done in Utah by Laur ("Cheetah") last summer.
What we will be doing is basically copying all the research studies that have been done by mainstream scientists that have credibility and acceptance, and put them together in a professional package. (Laur already did all this work; we will just copy what she has done).
The purpose of the package is to disseminate information to Governors, Representatives, and Senators in each state. One person from each state will be in charge of their own state.
The package will also contain a brief introductory letter from the person making the contacts. The first step will be phone calls to these legislators' offices to try to arrange interviews where the packages can be delivered personally.
The only modifications to the package delivered last year will be to bring the CDC information current, i.e., including the notification sent to health agencies in December.
We are striving for consistency, professionalism, and cogency of the message without getting extreme in the disease discription or theories.
There is a time and a place for everything, and if we can bring law makers on board, even if it means soft-soaping the complete nightmare that this malady really is, then that is the wise and prudent course of action we should take.

- The meeting, since I am on the topic, also introduced the 4 new members, and gave people the opportunity to discuss their own experiences and share information.
- Some of the research findings in the past were also discussed.
- Another portion was spent discussing remedies and treatments that were found helpful.
- Dr. Reed announced that a conference will be planned for the fall of this year, focussing in part on Morgellons, and likely on Lyme Disease as well. The conference will be geared toward medical professionals and CME's will be granted, but the public can also attend. This is very much in the initial planning stages, but more information will be forthcoming as the plans develop.
Lastly, the date for the next meeting was set for Sunday, February 22 - same address, at 2 pm.

I know that there are some readers on this forum who are within the general Tampa Bay area. I implore you to attend the next meeting. I well understand how difficult this may be, but we must advocate for ourselves. Every person present is important in getting the message out, and ultimately get what we need - resources dedicated toward finding the cause and a cure. It is for us, for our children, for our grandchildren, and ultimately for mankind.

Special thanks to Laur (for the bike fundraiser and the above) and to Cindy Casey (the Austin Conference in April and Mystery ER) for the great strides both of these brave women have made in 2008 on our behalf. I love you both.
Thanks, too, to Dr. Reed for donating her personal time, energy, and resources for our cause.

SS