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I hope you will be blessed by my personal experience with Lyme disease, as well as the Lyme disease educational info on my site. As a result of my battle, my family now serves as volunteer national Lyme disease educators.
We continually add evidence-based science and educational materials on the "Lyme Disease Education" tab (above) as they are published. We are often asked to speak and show the award winning Lyme documentary entitled "Under Our Skin", produced by Open Eye Pictures.
As I continue the fifth year in treatment for late stage Lyme disease, neuro-endocrine complexities, my desire is to use a gift that the Lord has given me and turn it back to Him.
When I was not able to move, walk or leave my home from the debilitating and complex problems that came with my own journey and battle, I began to draw. First, landscapes and objects; but that soon turned to fashion and clothing designs. I am currently a 2nd year part-time student under the Fashion/Retail Management Bachelor's program with the Art Institute of Pittsburgh Online Division.
Last September, after a year in the planning, we hosted my first Lyme disease charity fashion runway event to raise research dollars for a Lyme Disease Association- grant funded research project near and dear to my heart. This project is moving towards the hoped for gold standard test for Lyme, at any stage of the disease, using new state of the art technologies. I had the privilege of meeting and speaking with the researcher, Dr. Lutz. While the research has a little ways to go; it is well underway and part of the research and development that patients and doctors need. I want everything that I do to serve a purpose.
On Saturday, September 11, 2010, a wonderful team of volunteers helped me to launch my first runway charity Lyme event featuring HeatherRose designs. 100% of the ticket sales (250 guests) and a few gracious sponsor gifts raised over $3K. This first gift was delivered to the President of the Lyme Disease Association towards the research project.
Four of my designs will be auctioned in 2012, and will be gifted as part 2.
In 2008, I was blessed by the MakeAWish Foundation and Pure Fashion, the host organization for my wish to give back for Lyme research. Pure Fashion helped me create and put several fashion designs on their professional runway in Atlanta GA. Designs were auctioned the following several months and proceeds were applied to the LDA grant research project(details below), as well.
In 2011, the S.Central Lyme disease Forum hosted the second CME (Continuing Medical Education) training through the Chambersburg Hospital, for Lyme disease. Dr. Betty Maloney,MD, was our keynote speaker and her accredited presentation to physicians, specialists, staff and key administrators was well received.
This next year, our family hopes to bring an expanded continuing medical education program to S. Central PA for Chiropractors, Medical Doctors and in time, our PA Nurses. We are currently in the process of scheduling a Spring 2012 training for our military, with a US Army epidemioligist specializing in tick borne illness. As physicians, specialists, politicians, families and communities become more aware of the endemic nature of Lyme disease in PA; and as emerging science unfolds, we look forward to a turning of the tide when physicians ensure that the informed consent on behalf of a patient is inclusive of all testing and treatment options related to this disease and as ethically, rightfully promoted by the AMA (American Medical Association).
In 2010, Pennsylvania was ranked #1 endemic for Lyme disease in the U.S., by the CDC surveillance standards. The CDC states that this number is under-reported by an estimated 10 times. In 2011, Pennsylvania ranked in at #2.
Prevention is key. Do a tick check and seek to be informed as to steps you can safely take to protect yourself and your loved ones.
On behalf of my family and the S.Central PA Lyme Forum....
God bless, Heather Rose
"Let no man despise thy youth; but be thou an example of the believers, in word, in conversation, in charity, in spirit, in faith, in purity." ~1 Timothy 4:12
The following abstract has been published in the Journal of Bacteriology and the Journal of Emerging Infectious Diseases.
This is the research project that my family and I are committed to supporting:
Copyright (c) 2010, American Society for Microbiology and/or the Listed Authors/Institutions. All Rights Reserved.
Whole Genome Sequences of Thirteen Isolates of Borrelia burgdorferi
Department of Medicine, University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark, NJ 07103; Institute for Genome Sciences, University of Maryland, School of Medicine, Department of Microbiology and Immunology, Baltimore, MD 21201; Department of Pathology, Division of Microbiology and Immunology, University of Utah Medical School, Salt Lake City, UT 84112; Department of Biological Sciences, Hunter College of the City University of New York, New York, NY 10021; Biology Department, Brookhaven National Laboratory, Upton, NY 11793; Department of Medicine, Health Science Center, Stony Brook University, Stony Brook, NY 11794
Borrelia burgdorferi is a causative agent of Lyme disease in North America and Eurasia. The first complete genome sequence of B. burgdorferi strain 31, available for more than a decade, has assisted research on the pathogenesis of Lyme disease. Because a single genome sequence is not sufficient to understand the relationship between genotypic and geographic variation and disease phenotype, we determined the whole genome sequences of 13 additional B. burgdorferi isolates that span the range of natural variation. These sequences should allow improved understanding of pathogenesis and provide a foundation for novel detection, diagnosis, and prevention strategies.
Thank you for visiting: www.stylebyheatherrose.com
Questions: Email: scentralpalymeforum@yahoo.com
"Join me in the continuing effort to raise awareness and research dollars for the cure"
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