Professional Advocacy
This education advocacy has led to my deeper involvement in the Lyme disease professional and advocacy community.
In recent years, my expertise as a Lyme-Literate psychotherapist has afforded me the opportunity to speak at local and national conferences, to consult on the development of an Education Curriculum for the non-profit Time for Lyme, to contribute to the development of a brochure ("the ABC's of Lyme") for the Lyme Disease Association, and to provide in-service training for several school districts.
I am privileged to use my skills to support the efforts of many groups to stamp out the ignorance that surrounds Lyme disease. I am also privileged to be working with Lyme disease patients and their families, who know what it is like to struggle to get well in the face of a deeply misunderstood and debilitating illness.
LYMEDISEASE.ORG (LDo)
For 30+ years, I have been a member of LDo (formerly CALDA). The reason I joined came from the relationship I formed with Phyllis Mervine, the founder of CALDA and the Editor of the Lyme Times (LT). I loved the Lyme Times, because it was a high quality national print publication about Lyme disease, addressing the needs of patients, physicians, educators, parents, and health care policy makers. I became the Children’s and Mental Health editor of the Lyme Times. Phyllis and their Board supported my work, even encouraging me to begin a “Kids’ Column” of the LT, giving young Lyme patients the chance to compose short articles about their struggles with Lyme, and how they were coping. These articles appear in the Lyme Times archives, which are now online and no longer in print.
In 2005, I was approached by Lorraine Johnson, JD, the CEO of LDo, about doing a “Special Issue” of the Lyme Times on children and Lyme disease. It turned into two Special Issues, since one issue didn’t cover it all. The first one was the “Children’s Treatment Issue”, published in the Summer, 2005. The second was the “Children’s Treatment Issue”, published in the Summer, 2006. I have since done an occasional Guest Blog for the LDo, and I’ve enjoyed every topic I’ve covered. I’ve watched the organization continue to grow. In my view, their website is the most important and accessible website for families with Lyme disease. Their LT articles continue to be informative, even giving information that patients and parents of kids with Lyme can take to their doctors, to advocate for themselves or their children.
Lyme Connection
One day, over lunch at a Lyme conference, Karen Gaudian and Jennifer Reid, co-chair of Lyme Connection (formerly Ridgefield Lyme Disease Task Force) brought up the need for us to train mental health practitioners about Lyme disease, so that they would develop an understanding of Lyme disease, and how to work with Lyme patients and their families in their practices. After the three of us discussed how we would approach that training, Karen and Jennifer gave me the task of putting speakers together for an all-day seminar. I served as Program Chair and speaker at the seminar, “The Impact of Lyme Disease on the Brain.” Sponsored by the Lyme Connection and the Ridgefield Visiting Nurses Association, this seminar provided a full day of professional education to mental health practitioners. I invited several other practitioners, each with their unique expertise, to join me in training our colleagues, and to participate in a panel to respond to question from attendees. We held these day-long seminars annually for six years.​
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My work with Lyme Connection has been very rewarding, with this project fulfilling a dream of mine, to expand Lyme-literacy among mental health practitioners, so that more patients and families can get the help they need. As stated in their Mission Statement, their goal is “to make the community a healthier place by preventing tick-borne diseases and supporting patients and their families throughout their illness.”
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[The panel I assembled also did a seminar at Bryant University in Smithfield, RI co-sponsored by the RI chapter of the Lyme Disease Association, to provide training to mental health practitioners in RI and surrounding states. We were invited by Professor Joe Trunzo, PhD.]
Dr. Eva Sapi, University of New Haven
At a rally in Hartford, I met Eva Sapi, PhD, a Microbiology professor at the University of New Haven. She was attending the rally with her Masters level students, who were learning about Lyme disease.
That meeting led to my collaboration with Dr. Sapi and co-chairing several conferences for the community, on tick-borne diseases. We brought together speakers from across the US, to a packed room of attendees who were eager to learn more from these experts.
Since then, Dr. Sapi has continued with her microbiology research, pertaining to Lyme. She is now chair of the Biology and Environmental Science Dept. at University of New Haven.
