Lyme Disease Association

List of Bill Supporters to Date 6/11/08

Celebrity Support:
Author Amy Tan (author, Joy Luck Club)
Jordan Fisher Smith (author, Nature Noir)
Rebecca Wells, (author, Divine Secrets of the Ya-Ya Sisterhood)
Meg Cabot (author, Princess Diaries)
Brooke Landau (ABC News Traffic Anchor, San Diego)

Lyme Organization Support:
Lyme Disease Association, Inc. (national)

LDA Chapters, Affiliates, Supporters:
Alaska Lyme Support (AK)
California Lyme Disease Association, Inc. (CA)
Eastern Connecticut Chapter LDA (CT)
Newtown Lyme Disease Task Force (CT)
Ridgefield Lyme Disease Task Force (CT)
Time For Lyme, Inc. (CT)
Florida Lyme Advocacy, Inc. (FL)
Lyme Disease Association of Southeast Florida (FL)
Lyme Association of Greater Kansas City, Inc.(KS, MO)
Cape Cod Chapter LDA (MA)
Harford County Lyme Disease Support Group, Inc. (MD)
Mid-Shore LDA, Inc. (MD)
Minnesota Lyme Action Support (MN)
Mid-Missouri Tick Illness Coalition (MO)
Montana Lyme Support (MT)
Brookfield-Wolfeboro NH Lyme Support (NH)
Lymequest (NJ)
Lyme Disease Network of NJ, Inc. (NJ)
Hudson Valley LDA (NY)
LDA Corning/Finger Lakes Area Chapter (NY)
New York Lyme Support Program (NY)
LDA Southeastern PA, Inc. (PA)
Pennsylvania Chapter LDA (PA)
Rhode Island Chapter LDA (RI)
Greenville Lyme Advocacy Group (SC)
Texas Lyme Disease Association, Inc. (TX)
Lyme Disease Support Group of Southwestern VT (VT)
Military Lyme Support (national)

Lyme Groups & Non-profit LDA Friends:
International Lyme & Associated Diseases Society, Inc. (ILADS) professional medical society (international)
Lyme Rights (national)
LymeTopics (national)
Albany Lyme (CA)
Mid-Peninsula LDSG (CA)
Partners in Lyme (CA)
Southern California Lyme Support (CA)
The National Lyme Disease Memorial Park Project (CA)
Wolcott Lyme Disease Network (CT)
Delaware Lyme Support (DE)
Southern Delaware Support Group (DE)
Lanford Foundation – Lifelyme, Inc., The (FL)
Lyme Disease Education & SG of Florida (FL)
Lymnet (FL)
Eye on Lyme Network (GA)
Georgia Lyme Assoc (GA)
Iowa Lyme Disease Association (IA)
Lyme Disease Network (IL)
Lyme Wellness Center of Kansas (KS)
LA Lyme Disease Association (LA)
Mid-Shore Lyme Disease Association, Inc. (MA)
South Shore Lyme Support (MA)
After The Bite (MD)
Central Maryland Lyme Disease Support Group (MD)
Lyme Disease Education & SG of Maryland (MD)

Tri County Lyme Support Group (MD)
Maine Lyme Disease Support Groups (ME)
[email protected] (ME, International)
St. Louis Lyme Foundation (MO,IL)
Missouri Lyme/Masters Disease Support Group (MO)
North Carolina Lyme Disease, The (NC)
Minot Lyme Disease SG (ND)
Know Lyme in New Hampshire (NH)
Lakes Region Lyme Support (NH)
New Hampshire Lyme (NH)
New Mexico Lyme Support (NM)
Lyme In Orange (NY)
Nevada Lyme (NV) Empire State LDA, Inc. (NY)
Mid Hudson Valley Lyme Disease Support Group (NY)
Lyme in Orange (NY)
Northern Dutchess Lyme Disease Support Group (NY)
NYLyme (NY)
Turn the Corner Foundation (NY – tri state area)
Westchester Lyme Disease Support Group (NY)
NY PENN Lyme disease Support (NY, PA)
OregonLyme.NET (OR)
North Eastern PA Lyme Support Group (PA)
Lyme Disease Network of Middle Tennessee (TN)
Austin Lyme Support Group (TX)
NW Houston Lyme Support Group (TX)
Public Health Alert (TX)
Stand Up For Lyme (TX)
Gear Up for Lyme (VT)
Partners in Lyme (VT)
Vermont Lyme Information Resource (VT)
SEWILL (WI, IL, MN & IA)
Western Wisconsin Lyme Action Group (WI)
Lyme Disease Education & Support Group of America (national)

Others:
Central Florida Research, Inc (international)
NutritionAtHome.com (international)
Lynn McCabe Photography (national)
Innovative technology group (South East USA)
IGeneX, Inc. (CA)
Just Health/CA Consumer Health Care Council (CA)
Laborfair Inc. (CA)
High Point International, Inc. (CO)
Bills Country Garage, Inc. (CT)
Family Connections Center for Counseling (CT & NY)
Palumbos Good Year Car Care (DC)
Karstedt International, Inc. (FL)
Supernets, Inc. (FL)
Today Solutions Now (IL)
Alkalol Company, The (MA, nationwide)
Ivy Associates, Inc. (MA)
Parts Alternatives (MA)
Westporter Plantation & Cookery, Inc., The (MA)
Centreville Shipping & Services (MD)
Dance Connection, The (ME)
Delfino Financial Services, CPA, PA (ME)
Mainely Ticks (ME)
Lucky Finds Antiques, Collectibles & Quality Used Furniture (ME & NH)
Lyme Alert (ME)
Independent Consultant to the Pampered Chef (ME)
Oakwood Payroll Services, LLC (ME)
STOZ,LLC (ME)
Weight Room Fitness (ME)
Chandler Financial, Inc. (NC)
Grass Roots Landcare (NH)
Icarus Furniture (NY)
New Morgellons Order, The (TX)

Federal Legislation: $100 Million for Lyme and Tick Borne Disease Research & Education
National Lyme Disease Association & Numerous Groups & Notables Nationwide Announce Support for Bill

Jackson, NJ ─ The national non-profit Lyme Disease Association announces its support of federal legislation, “The Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007”. On January 31, 2007 , Congressman Christopher Smith (R-NJ) introduced H.R. 741, known as the Smith/Stupak (D-MI) bill, into the US House. Senator Christopher Dodd (D-CT) introduced the senate version, S 1708, on June 27, 2007 , on behalf of himself and Senators Schumer (D-NY) and Hagel (R-NE). Currently, there are over 124 co-sponsors combined with congressional representation from 28 states, reflecting the fact that tick-borne diseases are a national problem.

The legislation authorizes an additional $100 million for Lyme and tick-borne disease research, education and prevention over five years and provides goals which address the issues surrounding tick borne diseases. About 230 thousand Americans develop Lyme each year, making it the most prevalent vector-borne disease in the US today. According to the Centers for Disease Control & Prevention (CDC), only 10% of cases that meet its criteria are reported.

The bills provide a much needed and higher level of resources dedicated to Lyme and tick-borne disease and also contain numerous measures to ensure that resources are expended effectively to provide the most benefit to people with tick-borne disease. The bills direct the U.S. Secretary of Health and Human Services to include over a 5 year period development of a sensitive and accurate Lyme diagnostic test; improved surveillance and prevention; and clinical outcomes research to determine long-term course of illness and effectiveness of different treatments. It establishes a Tick-Borne Diseases Advisory Committee to ensure interagency coordination and communication among federal agencies, medical professionals, and patients/patient advocates.

“These bills are an outstanding piece of legislation that addresses chronic Lyme and tick-borne disease, an area often neglected by government and physicians alike,” stated LDA President Pat Smith . “Now we have a comprehensive set of goals designed to help patients receive early diagnosis and appropriate treatment and to help in the development of education and prevention programs. As a result of the introduction of this legislation, we are one step closer to realizing a federal law for Lyme and tick-borne disease, and we thank Representative Smith and Senator Dodd for their commitment to making this happen. Patients should contact their Congress members to co-sponsor this bill, H.R. 741/ S. 1708.”

Organizations, businesses and celebrities nationwide have signed on to a letter to support this legislation, with 118 currently on board. Internationally acclaimed author Amy Tan, Joy Luck Club, Jordan Fisher Smith, and Meg Cabot, part of LDA’s Literati with Lyme team (see www.Lymeliterati.org) support the bill, as does author Rebecca Wells. All these authors have had Lyme disease, and Tan and Fisher Smith have discussed their personal experiences in their books. “As yet another patient with Lyme disease, I personally look to this bill as my hope for the future” Ms. Tan states. “For the rest of this country, this bill represents the first reality-based plan for dealing with an epidemic that must be stopped. It is a devastating disease--one that is widely misunderstood, even within the medical community. Lyme is not simply temporary arthritis. Lyme can quickly become a brain disease with lifetime consequences. The Lyme bacterium is a more clever bacterium than previously thought. It can transform itself.”

Ms. Tan also questions why the disease is spreading so quickly in nearly every state and so many of its victims go undiagnosed, and why treatment fails in a proportion of late-stage patients. “If the disease goes unchecked, we will soon face a costly medical crisis nationwide,” Tan said. “Research is our war plan against Lyme disease. It is the only way we will be able to detect, combat, and destroy a bacterium that has spread to nearly every state in the union.”

The International Lyme & Associated Diseases Society (ILADS), a professional medical society, also endorses this legislation. The Society consists of treating physicians and other health care providers for chronic Lyme disease (see www.ILADS.org). ILADS is particularly concerned about the vast number of doctor-diagnosed cases which do not fit the CDC surveillance criteria and are never able to be reported, thus leading to an inaccurate picture of actual case numbers and distribution. These bills ask for reform of the diagnosis and reporting system.

LDA urges people to contact their US Congress members to co-sponsor H.R. 741 (Smith/Stupak) and S 1708 (Dodd/Schumer/Hagel). For link to bill text and more information and to locate contact information for your congress members, please visit the LDA website www.lymediseaseassociation.org and click Legislation on top menu.

Last Modified: June 16, 2008