For those of you not on the CALDA (California Lyme Disease Association) mailing list, I wanted to share the message they just sent me. I joined their list because they are extremely well organized and I often keep an eye on their site because it’s full of great information. It’s inspiring to me to see how many things folks in the Lyme world are accomplishing. Here’s their message:
Scientists sequence Lyme disease genomes
Researchers have determined the complete genetic blueprints for 13 different strains of Borrelia burgdorferi, the bacteria that cause Lyme disease. The wealth of new genetic data should help scientists develop improved ways to diagnose, treat and prevent Lyme disease. Click here to read more about it.
2010 CALDA Lymewalks raise research funds, awareness
San Francisco, Sacramento, Los Angeles, San Diego, Ukiah and Humboldt County were the sites of six CALDA Lymewalks held in September and October. In addition to increasing public visibility of Lyme disease and collecting funds for research, the events became Lyme community-building events as well.
Lyme-TAP program offers financial help to patients in need
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Rotary Club of Ferndale Foundation in coordination with Humboldt Lyme Awareness Group. It can provide reimbursement for up to 75% of the cost of diagnostic testing for tick-borne diseases. Click here for more information.
Massachusetts passes Lyme doctor protections
Governor Duval Patrick posed for this photo with Lyme activists after signing the 2011 Massachusetts state budget, which included an amendment to protect physicians who give long-term treatment for Lyme disease.
Increased media coverage of Lyme disease
Maine television station WSCH6 ran a 4-part series on chronic Lyme last summer. New Hampshire public TV station WMUR devoted a one-hour special to the subject. Almost every day, articles about Lyme disease appear on TV, radio, newspapers, magazines and on the internet. Many of these articles come about because Lyme patients contact media outlets suggesting coverage. Keep up the good work!
More in-roads into medical journals
CALDA board members Raphael Stricker, MD, and attorney Lorraine Johnson have co-authored some 30 Lyme-related articles which have been accepted for publication in professional medical journals. Their most recent one, published in Philosophy, Ethics, and Humanities in Medicine is the third most accessed article for all time in that journal, with over 10,000 hits.
Restructure of IOM hearing and the Congressional Record
After CALDA and other patient groups pulled out of an Institute of Medicine Lyme disease workshop to highlight a highly biased process, the IOM restructured the session to be less biased. With the help of Congressman Chris Smith (NJ), we entered our “state of the science” report into the Congressional Record. Click here to read it.
Increased Lyme activism
Becoming informed and staying connected are critically important for members of the Lyme community. More patients than ever are helping themselves and each other by joining CALDA’s network of on-line state Lyme support groups. And they are keeping abreast of Lyme-related news via the Lyme Times, as well as CALDA’s blogs, Facebook page and Twitter.