TOUCHED BY LYME: How the IOM is connected to the 2010 CALDA Lymewalks
I leave it to my blogging colleague, the Lyme Policy Wonk, to explain the disturbing details surrounding the Institute of Medicine's upcoming Lyme workshop. But I offer a few observations, because the issue directly affects something I’m heavily involved in—the 2010 CALDA Lymewalks.
Briefly, the Institute of Medicine is SUPPOSED to look at the “state of the science” related to Lyme disease. All the science. Including divergent points of view. However, as currently set up, the IOM workshop will be a love fest for people promoting the IDSA’s narrow view of Lyme disease, and will shut out reputable scientists who happen to disagree with that party line.
So what does this have to do with the Lymewalks? Here’s the deal. The same IDSA interests that have a stranglehold on the Institute of Medicine workshop also have a stranglehold on much of the Lyme research in this country. Scientists who want to do patient-oriented research—looking for ways to help sick people get well, as opposed to only developing vaccines—often have a difficult time getting properly funded.
That’s why patient groups have stepped up to raise money for Lyme research. Here’s how it works with CALDA: a committee of doctors, researchers, and patients evaluates research proposals submitted by scientists around the country. The committee offers funding to projects showing the most promise for helping patients suffering from tick-borne infections. CALDA currently funds projects at Stanford, UC Davis, Stony Brook NY, the University of New Haven and Johns Hopkins University.
The 2010 CALDA Lymewalks offer a way to help pay for even more research. The fundraising itself is done largely via the internet. Supporters create fundraising pages, telling why raising money for Lyme research is so important to them. They then email those pages to people they know, giving friends and family the opportunity to donate to this worthy cause.
The idea has caught fire with many of our supporters. San Francisco’s Colby Lenz has raised more than $5800 from her bedroom, while she battles the twin challenges of severe neurological Lyme disease and a brain condition called chiari malformation. Carol E., from Menlo Park, has raised more than $2700 from a long distance bicycle ride she dedicated to our cause. (Ill health had forced her to give up cycling. Lyme treatment has allowed her to return to this beloved activity.) Friends of a young Lyme patient in southern California, calling themselves “Team Ashlyn Levin,” have raised more than $2600.
If you’re thinking of creating your own fundraising page, don’t be intimidated by those big numbers. Smaller amounts also contribute to the cause. Susan Tyler-McPhee of Morgan Hill specifically asked friends to donate $2 each. So far, she’s raised $151, a few dollars at a time. Individually, some people might not consider making small donations to be worth the effort. But grouping them on a page like this helps modest amounts grow into bigger ones.
One of the six planned Lymewalks has already taken place. Three are this coming weekend: Sacramento, Ukiah, and San Francisco. Two more will be in southern California in October. If you’re in the neighborhood, we’d love to have you join us.
But if not, please join us in spirit. And wherever you are, consider making a donation and/or creating your own fundraising page. Together, let’s help Lyme patients get the medical research they need, no matter what the IDSA tells the IOM next month.
You can contact blogger Dorothy Kupcha Leland at email@example.com.