NEWS: CALDA changes its name, but not its mission
The California Lyme Disease Association has officially changed its name to LymeDisease.org. As founder and chair Phyllis Mervine explains, the goals of the organization have not changed.
We’ve outgrown our name and our logo, but not our mission. The California Lyme Disease Association (CALDA) is now LymeDisease.org. (When you say it aloud, say “Lyme-disease-dot-org.”) That might sound familiar since it is our URL. Our new name reflects what we already do. We remain committed to empowering Lyme patients through advocacy, education and research.
In 1989, we began our grassroots advocacy work in California. News of our organization and its accomplishments spread quickly. Within the first year, we received letters (the paper kind) from grateful readers in Connecticut and Michigan to Nevada and California. An early supporter in Arizona wrote: “I can’t believe it! Your newsletter is just what I’ve been waiting for.”
She was referring to the first issue of the Lyme Times– eight pages (two legal-sized sheets folded in half). The second issue was three sheets, the third five. Some of you may remember when we adopted a newsprint booklet format with 32 pages – I liked to call it a “lay journal.” New York advocate Betty Gross called it the “Tiffany’s” of Lyme newsletters. Now, the Lyme Times is a quarterly journal. We continue to print Lyme-related stories from across the country.
While sponsoring patient and medical conferences and passing more Lyme legislation in California than any other state, we have become increasingly national in our advocacy efforts. We played a pivotal role in the Connecticut Attorney General’s investigation of the IDSA and the review hearing of their guidelines.
Our website attracts national and international inquiries. We oversee a national network of online state-based patient groups. Recently, we published a significant study of the burden on patients with Lyme that drew responses from over 4,000 patients across the country. Our blogs – Lyme Policy Wonk and Touched by Lyme – focus on personal and policy issues faced by Lyme patients nationwide.
Our new name reflects the expanding scope of our work as tick-borne diseases continue to spread. Learn more about our efforts and join us to improve the future for Lyme patients everywhere. You’ll still find us where you always have – at LymeDisease.org.
Phyllis Mervine, founder and chairperson of LymeDisease.org, is Editor-in-Chief of the Lyme Times. She can be contacted at email@example.com.