Flying in to Washington to Lobby for Increased Lyme Disease Funding The Center for Lyme Action held its first Lyme Action Fly-in in February 2020

By Dorothy Kupcha Leland

T hey call it a fly-in. Advocates from throughout the country converge on the U.S. Capitol to talk with their senators and Congressional representatives. (Of course, not everybody arrives by airplane … but they do come from all over!)

I was pleased and proud to join the Center for Lyme Action (CLA)’s first Lyme Action Fly-in, which took place February 11–12, 2020.

The Center for Lyme Action was founded last fall by three people who want to increase the level of federal funding for Lyme and other tick-borne diseases. With charter member funding from Alexandra Cohen of the Bay Area Lyme Foundation and Project Lyme, the CLA jumped right into helping get the Kay Hagan Tick Act passed.

That measure became law in December 2019. But that’s only the beginning. Now it needs to be funded. And there are some other Lyme-related projects that need funding as well. That’s what advocates worked on during the fly-in.

February 11

Events on the first day brought us all up to speed. We heard from the CLA and from retired Air Force Colonel Nicole Malachowski. (She was the first female Thunderbird pilot, later forced to medically retire due to tick-borne illness. Now she’s a dynamite inspirational speaker and warrior for the Lyme cause.)

A dinner and reception that evening honored members of Congress and administration officials who “have demonstrated extraordinary support in the push to cure Lyme disease.”

Among those honored were Senator Susan Collins (R-ME), who received the CLA Champion Award, and Department of Health and Human Services Deputy Secretary Eric Hargan, who was the dinner’s keynote speaker and recipient of the Bay Area Lyme Foundation Lyme Innovation Award.

“Lyme is a frustrating and debilitating disease, but it’s a problem we can solve,” said Bonnie Crater, co-founder of the CLA. “Our award recipients have demonstrated extraordinary leadership in finding a cure and we are honored to have them as long-term partners in this important fight.”

Also receiving the CLA Lyme Champion Award were Senator Tina Smith (D-MN), Representative Collin Peterson (D-MN), Representative Anna Eshoo (D-CA), and Representative Chris Smith (R-NJ).

February 12

The next day, advocates fanned out to meet with their senators and Congressional representatives (or, more often, with key staff members). Armed with talking points and packets of information to distribute, we walked the halls in our bright green neck scarfs. (Such identifiers have become a “thing” in grassroots lobbying efforts these days. I found my scarf was a real conversation starter when standing in the security screening lines!)

Here is a selection of photos from the event.

Dorothy Leland and Bonnie Crater - Lyme Disease Funding

Dorothy Leland and Bonnie Crater

Senator Susan Collins - Lyme Disease Funding

Senator Susan Collins

Rep. Chris Smith, flanked by Bonnie and Jeff Crater - Lyme Disease Funding

Rep. Chris Smith, flanked by Bonnie and Jeff Crater

Getting ready to walk the halls of Congress. - Lyme Disease Funding

Getting ready to walk the halls of Congress.

About 60 advocates took part in this first Lyme Action Fly-in. It’s an important initial step toward educating our elected officials about what’s needed. Stay tuned for future developments.

Written by Dorothy Kupcha Leland,’s vice president and director of communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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