Kansas City, MO – Emerging Infectious diseases of the Central States (EICS) Conference

 
EICS Dinner Speech November 18, 2004

I am happy to be here and those who were here last year might remember that we lived in Kansas a few years while my husband was in the army and enjoyed out time in this area, and my first daughter was born in KS.

Last year my EICS trip was exciting. Mother Nature of the Midwest heralded my arrival with a series of what seemed to me to be F-5 tornadoes, which appeared all over the weather channel screen the week before my visit. In case I wasn’t worried enough, 3 days before my arrival, one hit a few blocks from where I was staying with the Griebs, who as former New Jerseyians, thought I needed to be scared along with them and proceeded to drive me by the damage. They then reminded me they had no basement to run into, and I spent the nights thinking of where to hide if one hit. I couldn’t picture the three of us in the bath tub.

After EICS was over, I breathed a sigh of relief to reach the airport where I was flying to CA via Texas, unscathed. My relief was short-lived. I was minding my own business removing my shoes and whatever else was necessary to go through the heightened airport security when I was removed from line and searched. The security officer motioned me over to where my bags had been going through the scanner & I had visions of being sent to prison instead of Texas. I thought that a tornado warning might even be appropriate and welcome at that time. He solemnly asked me if I had a change purse in my pocketbook. Of course, I replied what woman doesn’t. And obviously, they had just X-rayed my bag. Would you get it out please, he asked, without any humor. I told him to be my guest, and he said he has a rule never to go into a woman’s pocketbook. I assured him after 35 years of marriage, my husband still refuses to go into mine.

Puzzled as to what they wanted, and watched by him & a guard, I opened my pocketbook, took out the change purse and handed it to him. He opened it up and what do you think he pulls out? These look like fishing tackle, he says, as a whole line of flies with barbs are hanging out for all to see. Oh, I said to him, those are hackle-hair croppie flies. My husband is an avid fisherman & we live in NJ now & we lived here in KS once, and he grumbles that he can’t get any hackle hair flies in NJ so I promised I would buy them while here on business. I guess no one could make up a story like that because he finally laughed and put the flies back in and allowed me to pass. Moral of the story, the only barbs this trip will be verbal ones and my husband will have to suffer with Jersey flies.
The Lyme Disease Association, an all volunteer national non-profit, It has been busy pulling together affiliate organizations and chapters across the country. After our LDA/Columbia medical conference in Rye NY last month, the chapters & affiliates all met. At the meeting, we discussed ways to facilitate working
together to best serve the Lyme community. It was thrilling for everyone to finally see people they had been phoning or emailing for years together in one room.
LDA affiliates are busy: Time for Lyme (TFL) and LDA are still raising money toward the endowed Columbia research center and TFL is preparing for an April 2, 2005 gala fundraiser and has nearly completed a LD school curriculum for its community. California Lyme Disease Association has re-designed the Lyme Times and recently published a patient issue; Lyme Disease Network of New Jersey (Lymenet.org) is upgrading its website capabilities; Lyme Association of Greater Kansas City, well you know what you are doing, hosting the fully accredited Emerging Infectious Diseases of the Central States (EICS) conference ; Lyme Disease Association of Southeastern Pennsylvania has recently upgraded the Basics booklet and has hosted several seminars and moderates a teen Lyme forum. Our newest affiliate, Texas Lyme Disease Association, is educating doctors and patients.
Our Pennsylvania, Cape Cod, and Rhode Island Chapters disseminate information, with the RI having passed significant legislation protecting doctors’ rights to treat Lyme patients and mandating insurance coverage for Lyme patients. Additionally, I found out the chapter is to be the recipient of a benefit held in the RI mansions by Congressman Langevin.
PA has been in the process of an important bill passage this week, doctor protection and insurance coverage. Unfortunately after passage in the house, only 5 days remained in the senate, with tomorrow the last day, so time ran out for passage this year. The LDA Delaware Chapter hosted its second fundraiser, a beach walk on Oct. 24 and will be the recipient of another benefit Dec 3. Manhattan Lyme Support provides patient support, and our coalition partners, Stop Ticks on People, and the CT LD Coalition are, respectively, providing information on tick control and meeting with state officials.
Other people and groups are hosting fundraisers for us, a golf outing was held in Philadelphia, a major fundraiser & entertainment night will be held in Reading PA on Dec 10, VT Rotary held a bike climb up Mt Equinox this year.
WHERE DOES THE MONEY GO? Well, you may know we are partnering with Columbia University in New York to open an endowed research center there to study chronic Lyme disease. We also fund research projects such as the one just published in the Proceedings of the National Academy of Science which demonstrated through comparison of two new genome maps of different strains of borrelia that they can freely exchange genetic material among themselves, a characteristic which could lead to better diagnostic tools, perhaps even different treatment regimens.
This year, LDA is proud to announce its new honorary advisory board which includes individuals who have already made many significant contributions
elsewhere and now are making them to the Lyme disease movement: Amy Tan, world-recognized author, Mary McDonnell, movie and TV actress, Sarah Brady, who with husband Jim is a strong advocate in Washington, DC, and Pat Slaughter, President Carter’s scheduler in the White House.
We had some positive feedback on our meeting in Washington DC last year with Sec of Health & Human Services Tommy Thompson’s office, but it remains to be seen what impact a new HHS secretary will have on that issue. CT DOH invited LDA to a grant writing workshop where I was in Hartford CT actually yesterday. They are looking to develop a closer partnership with LDA which could certainly benefit the Lyme disease community. There are a few other activities planned in the activism arena with three other states but it is too early to discuss where they might lead. In NY of course we are waiting to see if Gov Pataki signs the OPMC reform bill which has some measure of due process for doctors who are charged by the OPMC.
Amy Tan has been very supportive and not only has inspired and contributed toward LymeAid 4 Kids fund, but she has also written the Preface of our Lyme Disease Update: Science Policy & Law resource book and has written a blurb for the back of our new kids book for children 8-12 Lyme Disease Is no Fun: Let’s Get Well! Additionally, she and another author Jordan Fischer-Smith from California whose new book Nature Noir will soon be published, are working on a benefit for the Lyme Disease Association called In the Literary Lymelight. It will focus on authors and publishers and others in the field who have Lyme and will consist of a press conference, gala event, and a forum where authors such as Amy Tan (Joy Luck Club, Kitchen Gods Wife Opposite of Fate) and Meg Cabbott (princess diaries) have already committed to do so. It will tentatively be help May 18, 19 with one or more NY universities perhaps involved.