image_pdfimage_print

LDA’s Opening Remarks

LDA Remarks at Opening of Lyme & Tick-Borne Diseases Research Center at Columbia University

April 30, 2007 ,  Pat Smith, President, Lyme Disease Association, Inc.  

Since the discovery of Lyme disease over 30 years ago in Connecticut, millions of people have acquired it in the United States alone, yet its sickest victims have been treated like Lepers, banished to a shadowy world where doctors are afraid to treat and where researchers on  only one side of the controversy surrounding Lyme are usually funded.  While battles rage, patients die—and doctors are targeted for treating, and children are taken away from parents whose only crime is having their children treated for Lyme disease.  

This is the world many of us mothers faced at the turn of the century, when some impatient moms, who had originally met in 1998, took matters into their own hands. Diane Blanchard, Debbie Siciliano, and I, met and conceived of the idea of developing something at Columbia . An endowed chair morphed into a center, one to study chronic Lyme disease, one that would be cutting edge and be under the direction of Brian Fallon, a man whose research in neurologic Lyme disease was already acclaimed internationally.    

So the journey began: three mothers, a researcher, and 2 attorneys spending hours in meetings hammering out what the center would be like, how the monies would be used, who would guide the center.  From the seed of the Center  idea to the time of full funding, Lyme disease reported cases increased by almost 1/3, and our chronological ages increased by 7 years. One of us became a Center Director and may have acquired a few gray hairs in the process :), two of us became mothers of high schoolers, and one had her last child graduate from college and acquired the title of grandmother, a title that will be bestowed upon me two more times this summer. In hindsight, 7 years was the blink of an eye, but for suffering patients, it has been an eternity. These patients are why we are here today.  

This center has been our dream, a dream that started with a strong partnership, a dream that required thousands of man hours, and woman hours, to bring it to fruition today in these hallowed halls of Columbia University Medical Center . As with most worthwhile things, the work was hard, frustrating, and seemed endless at times. But we had our dream, beyond that next mountain, we could see it− that nebulous concept of Center out there— shrouded in fog, one day giving us tantalizing glimpses of its potential, the next cruelly hiding its glorious nature from our view.   

Today marks the beginning of a new era, one in which chronic Lyme disease will finally have its day in the sun, where its deadly  secrets will be exposed for all to see.  Like any commencement, today signifies the passing from one stage to the next: today from dream to reality, and tomorrow passing into the future reality where the work is already progressing toward the cure for chronic Lyme disease. When that cure happens, I will not be on this podium but dancing in the streets, with my partners, Di & Deb, who will probably be holding me upright by then.   

At this time, I want to thank all of those esteemed scientists who have agreed to serve on the Center advisory board and everyone who has come today, especially the speakers and Dr. Ben Beard from the Centers for Disease Control & Prevention who came all the way from Ft. Collins Colorado to share in our celebration today.  

I thank all of those who have helped in this endeavor, an awesome effort, considering it has been done with all volunteers and both groups have scored other major accomplishments at this same time. We had total commitment from our attorneys (Phil Marella TFL, Jurij Mykolajtchuk, LDA), our boards (LDA board stand—Pam Lampe,  Corey Lakin, Ruth Waddington, Kim Uffleman, Inge Querfeldt, Linda Davis, Joan Wire, Jeannine Phillips), and our advisory boards. I particularly want to acknowledge my Executive Vice President, Pam Lampe, whose hard work behind the scenes is only exceeded by the tons of emails and phone calls I made to her over time, demanding actions no real person could complete, yet she did.   

I thank those who took time from their busy personal schedules to lend their support, like LDA’s Literati with Lyme: Amy Tan, Meg Cabot, Jordan Fisher Smith, E. Jean Carroll, Jennifer Weis, and Rebecca Wells, and LDA’s national spokesperson, Mary McDonnell who graciously joined us at the both the kickoff and the opening celebration today.  Then we have LDA chapters, affiliates, & supporters nationwide, the doctors, researchers, and the patients, who laughed with us, cried with us, and worked with us.   

I especially thank the donors, who without fan fare, have been so charitable to us, and without whose generosity, this dream could not have become reality.  I must not forget our families who have been so emotionally supportive of us and forgiving of the time we have spent on this project —our children, who have been an inspiration to us.  

I thank the Columbia team,  Dean of the Medical School, Dr. Lee Goldman;  Dr Jeffrey Lieberman, Chair of Department of Psychiatry; and former Dean Dr. Gerald Fischbach, supportive since the Center’s inception, and of course, Dr. Brian Fallon, whom I first met in 1993 when he gave a talk in a church basement in NJ for us. Rumor has it, he still gives the same talk today, and I guess we’ll find out later in the program. He has probably breathed a huge sigh of relief thinking he is now able to leave behind these three moms who have run him ragged for many years and be able to close himself into his lab, roll up his sleeves, and get to work. Little does he know, however, that relief is short-lived—we moms will be outside that lab door, peering in, banging on the glass for his attention, until he and the other Center researchers find that definitive test and ultimately, a cure for chronic Lyme disease.  

Last, but never least, I thank my partners and dear friends, Deb & Di, for their shared vision, their leadership, their dedication, and their camaraderie. United, we stood, and united, we stand. Surely, a Lyme Disease Research Center built on that kind of foundation shall be nothing but successful.

Thank you.