You are invited to…

A Special Meeting for the Leaders of New York State Lyme and Tick-borne Disease Support and Advocacy Organizations

Sarah Jane Johnson Memorial United Methodist Church
308 Main St.
Johnson City, NY 13790
May 3, 2019
(Registration opens at [TBD] — Program begins at 5:00 pm)

TO: New York State Lyme and Tick-borne Disease Advocates and Organization Leaders

FROM: Christina Fisk, President, Lyme Action Network

DATE: March 3, 2019Over the years, many of us have had informal conversations about the prospect of working together to help tackle the numerous tasks that are part of our operations as leaders of organizations supporting and advocating on behalf of victims of tick-borne diseases. We regularly note that we all have essentially the same goals and challenges, but our geography separates us, so we tend to address our issues locally, gratefully grabbing whatever help we encounter as it comes along.

We also repeatedly note that this isn’t a particularly efficient approach to a universe of problems that seems only to grow in dimension and frustration. In the course of any year, many of us do the same tasks, present the same speakers, and fight the same battles, usually isolated from other organizations doing nearly identical work. Missed opportunities for synergistic cooperation abound, within our state and across state borders, as well.

Perhaps we can do something about this. Several of us have put our heads together, and would like to invite the leaders of New York State Lyme and TBD organizations to convene in the approximate middle of the state in approximately the middle of the year, to embark on a conversation about how we might work together to share ideas, skills, and resources so that we all aren’t always reinventing the same wheel as we tackle the myriad of tasks before us.

Jean Ann Redman and her colleagues at Southern Tier Lyme Support have graciously volunteered to host a meeting where we can gather and begin a discussion about synergies. The meeting has been organized for Friday, May 3, 2019 at the Sarah Jane Johnson Memorial United Methodist Church, 308 Main St., Johnson City, N.Y. 13790. The meeting will begin at 5:00 pm and run through the dinner hour. Southern Tier Lyme Support will provide dinner for participants. (The exact time the registration desk opens remains to be confirmed.)

To get the ball rolling, a suggested agenda is attached.

At this point in the process, we’d like to keep the initial conversation centered around whether it is feasible, practical, and desirable to work towards some types of coordinated efforts, and what that might look like. Once we see how those questions and answers take shape, we can develop more specific goals and defined processes to accomplish them at subsequent gatherings.

As someone who has been in the Lyme battle for only 16 years (many have nearly double that time under their belts), I am always amazed and inspired by the heavy burden successfully being carried by the advocacy community. I look forward to exploring ways to share this burden, hopefully enhancing our impact as we progress.

Please review our suggested agenda. Comments or suggestions can be sent to [email protected]. Our online Registration Form should be available within a few days, so please check back and register online.

On behalf of Jean Ann Redman and members of Southern Tier Lyme Support; Holly Ahern (Lyme Action Network); and Jill Auerbach (Hudson Valley Lyme Disease Association), all of whom are helping to shape this event, I thank you for your interest and look forward to meeting you in May.

Register Now



Sarah Jane Johnson Memorial United Methodist Church
308 Main St.
Johnson City, NY 13790
May 3, 2019
(Registration opens at TBD  —  Program begins at 5:00 pm)



  • Why We Are Here. How Can We Help Ourselves?


Survey — Current Situation

  • What are we all doing?
  • list the various missions
  • list the populations and geography served
  • inventory the tangible and intangible assets of the participating organizations:
    • Active Professional Assets  (i.e., professors, medical personnel, attorneys, etc.)
    • Venue assets (i.e.,  access to a large auditorium; local businesses willing to open their facilities;
    • Supportive legislators
    • Having informational materials already in production
    • Having a source of financial support

Brainstorming – What could collaboration and cooperation look like?  A general discussion.

  • How to link missions – who and what endeavors would be good candidates?
  • How to share assets like experts, events, facilities, contacts, materials, etc.
  • Enlist legislators to talk to other legislators.  Build external networks. How to set the stage for this to happen.
  • What would it take to explore “next steps” for those who are interested?

Setting a Short Term Plan

  • Create Subject Specialty Teams?
  • Nominate a small exploratory committee to develop some ideas.
  • Set next meeting