A Celebration of Life for Pat Smith will be held September 7 in Neptune, New Jersey. It will also be livestreamed. Click here for details.

From the Lyme Disease Association website:

It is with deep sadness and a profound sense of loss that we share the news of the passing of our dear friend and long-serving President of the Lyme Disease Association Inc, Patricia V. Smith.

She died peacefully on August 17, 2024, under hospice care, with her family at her bedside. Those of us fortunate to have worked closely with Pat may have started as fellow advocates, affiliates, colleagues or board members, but we quickly grew to also become her friends. We saw ourselves as her extended family and Pat always treated us as if we were.

To say she was a powerful force for good in the Lyme disease community is an understatement. Backed by her husband, Rich, she traveled the country, connecting with people, communities, and government agencies. We all knew that her phone never stopped, especially when an affiliate member needed help getting good Lyme legislation passed in their state. She pointed out the stumbling blocks and landmines in the proposed bill, as well as the good points. She was an amazing teacher.

Above everything else, Pat loved her family. When we were together at conferences, she told us heartfelt stories. When her first grandchild was born, she was absolutely joyous. And with each grandchild, her joy increased. She was proud of her family and loved to be with them.

We thank Pat’s family for graciously sharing her with us. We particularly thank Rich for his unending support of her work, our work, serving on the Board as vice president of the LDA, and being by her side at so many conferences and events!

Fiercely committed

Why was Pat so committed to the organization she took over? She gave a few reasons:

Her own daughter’s illness gave her an awareness of how serious Lyme could be, which led to her life’s work.

It was about the children with Lyme, to support research that would ultimately help them get well and to remove the obstacles to diagnosis and treatment.

It was about the mothers. When her daughter was hospitalized due to Lyme, she met other mothers, and they got to know one another. She told one of the affiliates that she did not want to see another mother suffer alone, recognizing how painful isolation was for these moms.

Wherever possible, Pat built relationships. She built the LDA Affiliate Network, bringing together large and small advocacy groups nationwide. Meeting every year, the evening before the LDA Annual Conference, the advocate members got to know each other, and the work they were doing. Pat and the LDA often partnered with Lymedisease.org (an LDA affiliate) on large national projects.

Pat met her Congressman, Christopher Smith (R-NJ), at a town hall meeting in Wall Township, NJ in 1992, where Pat explained the plight of Lyme disease patients, including her own daughters.

Congressman Smith immediately became committed to Lyme disease issues. He and Pat formed a friendship, which Pat dearly valued. Their collaboration on behalf of Lyme disease patients, families, and health care providers lasted over 30 years.

Testifying before Congress

Pat worked with Congressman Smith on many Lyme/TBD issues over the years, including providing LDA’s input during the federal appropriations cycle every year. Pat twice testified before the US House of Representatives on Lyme disease – before the Foreign Affairs Global Health & Human Rights Subcommittee and before the Energy and Commerce Health Subcommittee.

Aside from serving as President of the LDA for over 27 years, Pat was a member of Columbia University’s Lyme and Tick-borne Diseases Research Center Advisory Committee and a member of the Environment Protection Agency’s (EPA) PESP Partnership to promote avoidance of tick exposure.

She served on several panels for LymeX, the public-private partnership between the Cohen Foundation and HHS.

Pat served two terms as a public member of the HHS Tick-Borne Disease Working Group (TBDWG). Her accomplishments in the group included serving on several subcommittees. She co-authored and contributed to several significant documents within the group. She was involved with the US Army and Congress in various endeavors.

Pat was a founding member of ILADS (International Lyme and Associated Diseases Society). She was also a member of the Chronic Lyme Expert Panel of the online journal “Contagion: Infectious Disease Today.”

Funding Research

Pat led the efforts to raise funds for researchers nationally. The LDA awarded 127 research grants – research that was acknowledged in 62 scientific journals.

She organized 22 scientific conferences, offering CME credits for physicians, most sponsored jointly with Columbia University, with Brian Fallon, MD, as Co-Director. She spoke at many conferences – The University of New Haven (CT), California Lyme Disease Association (now Lymedisease.org), Midcoast Maine Lyme Education and Support, Colorado Tick-borne Awareness Association, Lyme Connection (CT), and ILADS. She has spoken at hundreds of public school, business, and government events.

Pat led the LDA in its efforts, with Time For Lyme in CT, to endow the Columbia Lyme and Tick-Borne Diseases Research Center in New York, which opened in 2007.

Her accomplishments are too numerous to mention! For more information on her extraordinary achievements as President of the LDA, click here for her bio. Pat’s life before the LDA is also available there.

Helping families

She was always committed to helping children and families, directly or indirectly.

The ABC’s of Lyme DiseaseTM brochure is very helpful to give out to members of Child Study Teams at school meetings as well as to parents to begin teaching them about the effects of Lyme on students. The LymeR PrimerTM (translated to Spanish in 2020) features 20 tick-borne diseases, prevention, symptoms and tick identification. At last count, over 2.5 million educational items have been distributed!

Pat has presented oral and written testimony to support the passage of federal and state legislation for Lyme research and physician’s right to treat. (CT, MA, MD, MN, NH, NJ, NY, PA, RI.) Click here for Pat’s Testimonies, Speeches & Positions

Pat has been given numerous awards by various organizations, and has had her articles published. Click here to view her list of publications

Always thinking of children and families, she worked with author Amy Tan on creating LymeAid 4 Kids (LA4K). This fund helped pay for diagnosis and treatment for children with Lyme and tick-borne disease and whose families have financial difficulties. LymeAid 4 Kids has, to date, awarded over $475,000.

LDA to close its doors

Pat is no longer with us, and the decision has been made to close the LDA doors in December. We are working to move some of the LDA programs to other groups and organizations. We have decided to honor Pat by transferring ownership of LymeAid 4 Kids to the Colorado Tick-Borne Disease Awareness Association (COTBDAA), the organization of longtime Lyme Advocate, Monica White.

Monica White has been a member of the LDA Affiliate Network for eight years, working closely with Pat. She has been a steadfast advocate for Lyme patients and families. We are confident that she will run this program with the same high standards that Pat did. We are thrilled that the same volunteers who worked on this program will remain with it as it moves to Monica’s group.

If you would like to make a donation in Pat’s memory, please go to COTBDAA’s website and click on LA4K in the drop-down menu. https://coloradoticks.org/donate/

Those who knew Pat understood that whatever she would undertake would be right and just. She never compromised her principles. If she learned that something was not honest or in pursuit of justice, she would walk away. We could all count on her having the highest integrity and being a brilliant thinker. Our standards became higher under Pat’s influence.

We will truly miss our beloved friend, mentor and leader. We will carry her in our hearts and in our lives. Thank you Pat Smith for making the world a better place.

There will be a Celebration of Life at Ely Funeral Home, Neptune, NJ on Saturday, September 7, 2024 at 12-3pm. Please check back here for updates and live stream option.

Warmly,

LDA Board of Directors

Richard H. Smith, BA, Executive Vice President, Treasurer
Corey Lakin, AB, 2nd Vice President, Technical Support
Ruth Waddington, RN, Secretary
Jeannine Phillips, BA, Board Member
Timothy Lynagh, MBA, Board Member