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 pmervine@lymedisease.org.
Yay! Congratulations on the new name. You have been an amazing source of information as CALDA. May you reach more and more people as LymeDisease.org!
Thank goodness for Lymedisease.org!!!
Lymedisease.org doesn't really have a ring to it.
John S
The change makes sense as CALDA has become much more than a one-state oriented site. LymeTimes and the amazing advocacy work you've done on behalf of all Lyme patients has created a national (and I'm sure, international) following.
One question…does this change your affiliation with LDA?
I think it's great–name of organization + website–all-in-one and easy to remember.
Keep up the great work!
LDO, perhaps? Regardless of your name, you've been a consistent contributor to the understanding of Lyme and associated diseases and an advocate for those with Lyme who can't find competent help. Congratulations!
Congrats on the generic, inclusive name! Here's to a future of energetic comprehensive Lyme advocacy!
Well, the change also clears up another situation – when I first found out I had Lyme, I contacted the CALDA url by phone and was chatting away enthusiastically about Lyme disease,
and then there was a silence, and the person said, "Um, we don't do Lyme disease here." Turns out that http://www.calda.org is the url for the California Association of Legal Document Assistants.
Since then, I have caught other Lyme sites listing that url, so it looks like we won't have to go through url confusion anymore!
Congratulations on this step forward. I love the simplicity and clarity of the name. I remember when Charles Carkeek set up the original website, how thrilled he was to find that LymeDisease.org was available for you to use. He will be equally thrilled to hear that you are now using that powerful URL to indicate the broad reach of the work you do.
I follow this website from Canada almost every day. Keep up the fantastic work!
Dear Phyllis,
Ty for your years of dedication and devotion to LD research and advocacy. The LDA and CALDA were years ahead of their time; paving the way and laying the grass roots foundation for those of us who then came along with great need to be equipped for our personal battles and for our own communities. We have been able to help equip countless families and physicians with your resources and evidence based science. We are thankful to have such courageous, determined light-bearers speaking on behalf of those voices that are at the mercy of long suffering, too ill to stand yet. You amongst other warriors are their life line. We are very blessed! ~d
Thank-you, Phyllis! Name change makes sense. Thanks for all the incredible years of service – after reading these posts, I realize I first got sick with Lyme the year you created CALDA, but went undiagnosed (of course!) until 2003, when I got re-infected , really sick! and found CALDA and got diagnosed, because of a doctor who was familiar with CALDA!! I hope you have the good health to continue with your advocacy work for many, many years to come!! Teri