Madison Area Lyme Support Group

Tick-borne diseases are a serious public health problem. Join us at one of our engagement meetings to

• Learn about relevant initiatives and developments
• Hear updates from federal agencies
• Provide input about patient concerns and priorities

Audience: The general public; patients, caregivers, family members, and advocates; clinicians and healthcare providers; researchers; funding organizations

Upcoming Meetings

Virtual Community Engagement Sessions

Three virtual sessions will cover the topics of mental health, diagnostics, and treatment. These topics chosen were by the public at the San Francisco meeting on June 11, 2024.

Session 1: Mental Health and Neurological Effects

When: October 24, 2024

Time: 1:00 pm – 4:30 pm Eastern

Where: Virtual

Register to Attend

Meeting Goal: The purpose of this meeting is to engage the public—patients, caregivers, and healthcare providers, in particular—in an educational and informative session on the mental health and neurological effects of tick-borne diseases and associated illnesses and conditions (TBDAIC). Presentations by clinicians and researchers will provide insights into these complex and multi-faceted topics.

Meeting Objectives:

• Validate the patient and caregiver experience.
• Educate the audience about the nuanced mental health challenges of TBDAIC.
• Describe potential neurological effects of certain TBDAIC.
• Provide resources for patients and caregivers seeking help with the mental health effects of TBDAIC.
• Furnish information to help healthcare providers recognize, treat, and proactively address the mental health effects of TBDAIC in their patients.

Meeting Agenda

Time	Agenda Item
1:00 pm – 1:15 pm	Introduction and Welcome Remarks James Berger, MS, MT(ASCP), SBB Office of Infectious Disease and HIV/AIDS Policy (OIDP) B. Kaye Hayes, MPA Office of Infectious Disease and HIV/AIDS Policy (OIDP) ADM Rachel L. Levine, MD U.S. Department of Health and Human Services (HHS)
Clinician Perspectives
1:15 pm – 1:45 pm	Neuropsychiatric Aspects of Tick-borne Diseases and Associated Illnesses Brian A. Fallon, MD, MPH Director, Center for Neuroinflammatory Disorders and Biobehavioral Medicine Director, Lyme and Tick-Borne Diseases Research Center at Columbia University
1:45 pm – 2:15 pm	Neurologic Lyme Disease in Children: Preview of an Ongoing Clinical Study Lise E. Nigrovic, MD, MPH Senior Physician in Pediatrics, Boston Children’s Hospital Professor of Pediatrics, Harvard Medical School
2:15 pm – 2:45 pm	It’s Not Just About Avoiding Red Meat: Giving Voice to the Untold Implications of Alpha-gal Syndrome Scott Commins, MD, PhD Medical Director, UNC Allergy & Immunology Clinic at Eastowne Professor of Medicine, Division of Rheumatology, Allergy, and Immunology, UNC School of Medicine
2:45 pm – 3:00 pm	BREAK
3:00 pm – 3:20 pm	A Clinician Toolkit: Improving Care for Patients with Prolonged Symptoms and Concerns about Lyme Disease Grace E. Marx, MD Medical Epidemiologist, Centers for Disease Control and Prevention
Researcher Perspectives
3:20 pm – 3:50 pm	Brain Changes and Symptom Correlates in Lyme disease Cherie Marvel, PhD  Associate Professor of Neurology and Psychiatry, Johns Hopkins University School of Medicine
3:50 pm – 4:20 pm	Powassan Encephalitis: An Emerging Tick-Borne Disease of Human Health Concern Saravanan Thangamani, PhD Professor of Microbiology and Immunology, Upstate Medical University, Syracuse, NY
4:20 pm – 4:30 pm	Concluding Remarks and Adjournment James Berger, MS, MT(ASCP), SBB (OIDP) What did we hear today? What’s next: Upcoming sessions and Portland ME Public Meeting
This is a draft agenda and subject to change

Sessions 2 and 3

Details coming soon.

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**Comment**

Just don’t expect much from this…..

For more:

• https://madisonarealymesupportgroup.com/2022/10/28/lyme-advocate-asks-tbdwg-where-we-are-today-after-a-6-year-pacifier-answer-no-where/  Crucial Excerpt: