Duke University May Awareness Guest Blog – Lyme Disease Advocacy Project Update

May Awareness LDA Guest Blogger

Luke Mears

Luke Mears is a third-year law student at Duke University School of Law. Luke contracted Lyme disease in the summer of 2020, right at the onset of the Covid 19 pandemic where medical attention was difficult to obtain.  After recovering, Luke wanted to become involved in advocating for better legislation and resources around Lyme disease, and as a result co-founded and now co-directs Duke University School of Law’s Lyme Disease Advocacy Project. The project focuses on answering legislative and legal questions that the Lyme Disease Association has to allow the organization to better advocate and lobby for Lyme disease resources. After graduation, Luke will be working in Sidley Austin’s Boston office as a litigation associate.

Madison Pinckney

Madison Pinckney is a third-year law student at Duke University School of Law. Madison contracted Lyme and other tick-borne diseases when she was nine years old but wasn’t diagnosed until she was 19. While working to heal from the long-term effects of delayed diagnosis, Madison decided to attend law school to make tangible change in the Lyme and chronic illness communities. At Duke, she co-founded and co-directs the Lyme Disease Advocacy Project, answering the Lyme Disease Association’s legislative and legal questions to help it better advocate and lobby for change in the treatment of Lyme disease. After graduation, Madison will begin a fellowship with New York Lawyers for the Public Interest.

Lyme Disease Advocacy Project Update

by Madison Pinckney and Luke Mears*

A Formally Recognized Pro Bono Group

In the summer of 2022, the Duke Law Lyme Disease Advocacy Project gained recognition as a formally recognized pro bono group within Duke University School of Law. Madison Pinckney and Luke Mears, who are now third year law students, founded the group as first year students. They wanted to help the Lyme disease community and provide with students with opportunities to work on legal, legislative, and advocacy questions centering around Lyme disease. The group partnered with the Lyme Disease Association and began researching and answering questions surrounding Lyme disease advocacy that have gone unanswered for years.

Advocacy for Lyme Disease in the Durham Community & Beyond

Duke University Lyme Disease Advocacy Update
Photo thanks to Duke Law: (L) Luke Mears, LDAP Co-Founder, (C) Stella Boswell, Assistant Dean of Public Interest and Pro Bono; (R) Madison Pinckney, LDAP Co-Founder

The group has had tremendous success since its inception. Since becoming a formal pro bono group, students have volunteered more than 280 hours towards research supporting advocacy efforts. In the spring of 2023, the group won a Duke Outstanding and Noteworthy Endeavor (D.O.N.E.) award for Greatest Service to Outside Community. In receiving the award, the law school stated the “organization has made significant strides in raising awareness about Lyme disease and advocating for those affected by it in the Durham community. Your work has helped to educate the public about this debilitating disease and has provided valuable support to those in need.”

By creating and directing the project, Luke and Madison have expanded their knowledge of the disease and been able to address issues related they are passionate about. For Luke, the project revealed just how many people are impacted by the disease. Every semester, not only would volunteers reach out wanting to help with the project due to their or loved ones’ experiences with Lyme disease, but students interested in Duke Law, admitted students, and alumni have all reached out expressing gratitude or interest in the project because of their personal experiences. Developing a space for students to learn about the issues surrounding this complicated disease and to work on solving issues that have gone unresolved for so long has been one of the most rewarding experiences Luke has had throughout law school.

For Madison, the project has brought both hope and sorrow. Each week she receives emails from people across the country looking for assistance with their Lyme disease journey. Through these individuals, she sees how catastrophic this disease can be, and finds parallels to her own story. But there is still so much hope. She sees it in the volunteers’ dedication, in the tireless work of the Lyme Disease Association, and in the continued expansion of the project.

The Future of the Lyme Disease Advocacy Project

As Luke and Madison graduate this spring, the project will be taken over by John McDaniel, a second-year law student who has been dedicated to the project for the past two years. After serving as the project’s second year representative this past year, he is poised to expand the project with an eager group of volunteers ready to make a difference in the Lyme community. The hope is that the group can continue at the law school as long-term pro bono group, both to continue the great work it is doing and also to educate volunteers and students on the damage this disease can do.

Read the May 2024 Memorandum >

The May 7, 2024 memorandum authored by members of the Lyme Disease Advocacy Project details the relationship between the Centers for Disease Control and Prevention and the Council of State and Territorial Epidemiologists. Read More >

*Author Note: The opinions expressed in this Blog are personal opinions of authors Madison Pinckney and Luke Mears only and do not necessarily reflect those of any other entity.