HR 4701 LYME BILL PASSED BY HOUSE OF REPRESENTATIVES
On Sept. 9, history was made when the first-ever standalone bill addressing Lyme disease—the Tick-borne Disease Research Transparency and Accountability Act of 2014 -- passed the House of Representatives. This important legislation now goes to the Senate.
It is not yet known whether a Senate vote will take place in this session of Congress.
The bill which received bipartisan support in the House, would if signed into law, set up a working group with patients and physicians at the table, and contains language requiring the Secretary of Health and Human Services to submit a strategic plan to Congress including a plan for improving outcomes of Lyme disease and other tick-borne diseases.
The House passage of this bill is due in part to the ongoing efforts of the bill’s sponsor Rep. Chris Gibson (R-NY) and Chris Smith (R-NJ).
Link: CSPAN clip of debate and vote
Link: Text of Hr 4701
CALLING ALL CHILDREN WITH A SPECIAL CHANCE TO SAY THANK YOU TO DR. JONES
On October 11th Dr. Jones will be honored at the ILADS Gala in Washington DC. You have a chance to say a personal “Thank You” to Dr. Jones by decorating your own personal STAR (using a downloaded template), signing and mailing to the ILADS staff, in time for the even.
Click here for more.
LYME RESEARCH ALLIANCE'S ADVICE TO GOLFERS:
STAY TICK SAFE!
Many golfers shrug off Lyme disease thinking it’s a threat they don’t have to worry about. But even the most urban-set golf course can be home to ticks that that carry the Borrelia burgorferi spirochete which causes Lyme disease. Here are some practical steps that golfers can take to combat ticks and Lyme disease.
It is with great excitement that we share our intention to merge Lyme Research Alliance with The Tick-Borne Disease Alliance. The Lyme community must combine forces to bring about the massive increase in research investment through private and government sources, that will be needed to make Lyme and other tick-borne diseases (TBD’s) both preventable and curable. Therefore, Lyme Research Alliance and Tick Borne Disease Alliance are taking a bold step in order to more efficiently respond to this growing problem. On May 28th, the Board of Directors of both organizations voted to legally merge together. While we await approval from the respective state regulators, we will work together toward the goal of merging to become one organization with one mission under a new name that will reflect the important work of these two prominent groups.
In making this move both organizations are responding to what our donors have been saying for years: “Why are there so many different Lyme organizations?” and “Which one should we support?” By bringing together two of the largest players in the field, we expect to speak with a single, more powerful voice, and to channel a larger proportion of our donors’ dollars into finding a reliable test and a cure.
Thank you for your very valuable support throughout the years, which we hope you’ll continue in the future as we strive to educate the public about TBDs, find a reliable diagnostic test, and discover effective treatments for all stages of Lyme and tick-borne diseases.
This press release went out to the media on May 29.
More about TBDA at http://tbdalliance.org
If you have any questions, please don’t hesitate to reach out to us.
STAR-STUDDED GREENWICH GALA A GREAT SUCCESS!
BIG thank you to everyone who attended Lyme Research Alliance's star-studded "Time for Lyme" Gala on April 5 at the Hyatt Regency Greenwich! The final total of funds raised is expected to be over $1 million to help fund Lyme disease research.
The evening was a terrific success, with heartfelt and inspiring presentations from our honorees Star Light Award winner Elena Delle Donne of the Chicago Sky basketball team and Ying Zhang, M.D., Ph.D., of Johns Hopkins Bloomberg School of Public Health. TV personality Gretchen Carlson served as Mistress of Ceremonies and kept the evening moving at a lively pace. A spirited Live Auction was led by auctioneer Jason Lamoreaux.
Special thanks to our patrons and sponsors, our Fund-a-Cure and Auction item donors, our Benefit Committee, and everyone who bid and made a gift to support urgently needed medical research. If you weren't able to join us or would like to make an additional contribution, it is never too late to donate to LRA.
Proceeds from the Gala and Auction go to help fund the dedicated scientists who are working long hours on ground-breaking medical research projects to develop a reliable diagnostic test for Lyme, and ultimately a cure for the disease.
Here are some highlights from the evening:
Actor Peter Sarsgaard's Letter of Support
LRA Video: “Faces of Lyme” http://youtu.be/ASyitEK-TiE
Video: Elena Della Donne’s Lyme fight with Lyme: http://youtu.be/4cedxIIAhww
RECOMMENDED ARTICLE FROM CONGRESSIONAL QUARTERLY
Comprehensive article in the November 2013 issue of CQ Researcher Quarterly, provides an excellent overview of the current Lyme landscape including co-infections, discussion of the mouse and primate studies and a balanced articulation of the arguments on both sides of the Lyme controversy.
DONATE APPRECIATED STOCK THIS YEAR FOR A DOUBLE TAX PLAY
With the stock market in record high territory this year, NOW is a particularly beneficial time to consider a gift of appreciated stock to the non-profit organizations you support – which of course we hope will include Lyme Research Alliance. If you are planning to make a donation to Lyme Research Alliance, you might want to look through your stock portfolio before you write a check. Giving appreciated stock instead of cash can greatly benefit both parties. If the stock has increased in value from the time of purchase, the owner can avoid paying the capital gains tax by donating the security to charity. When the security is being donated to a charitable organization and has been held more than a year, the total amount will still be eligible for a tax deduction. Since taxation is avoided on the stock donation, the giver will be able to make a larger donation.
GROWING RECOGNITION OF LYME BY THE MEDIA
Some good news for the Lyme community is that Lyme disease is receiving an unprecedented level of coverage in the media, with a particular focus on chronic cases where diagnosis and treatment failed the patient. Here are some of the current stories:
December, 2013: New Recognition of Lyme Deaths: It wasn't long ago that the deer tick was seen as dangerous - but not a killer. That view is changing. Public health officials report that at least 10 people in Massachusetts died last year after contracting tick-borne diseases. One was a young adult who, as reported in December by the Centers for Disease Control and Prevention, collapsed in November 2012 after suffering a rare cardiac event known as Lyme carditis. Read more.
October 1, The Huffington Post: Lyme Around The World Series: Each week in the Huffington Post, blogger Cathy Rubin examines the current state of Lyme and other tick-borne diseases around the globe. She has interviewed leading researchers and government officials in the U.S., Japan, Australia, France, Germany, Norway and other countries. Read more.
August 18, Boston Globe: When the Cure Doesn't End Pain: Third article in a series by staff writer Beth Daley: some Lyme disease patients have symptoms that can linger for years despite standard treatment. Scientists are puzzling over how that can be. Read more.
July 12, NY Times: Tick Checks, Bug Spray and Antibiotics: Summer in the Age of Lyme, by Hope Reeves. The worst summer for Lyme on Block Island. Read more.
July 12, CNN: Why You Should be Afraid of Lyme Disease: A compelling documentation of chronic Lyme and the serious problems that still surround its diagnois and treatment from an authoritative source, Pamela Weintraub, author of "Cure Unknown: Inside the Lyme Epidemic", winner of the 2009 American Medical Writers Association book award. Pamela is also executive editor of Discover magazine. Read more.
July 8, NY Times: “When Lyme Disease Lasts and Lasts”, from personal health columnist Jane Brody showcasing several case stories that will sound familiar to those families living with Lyme. We enjoyed the quote from LRA-funded researcher John Aucott referring to long-term Lyme sufferers who are labelled by some as hypochondriacs or sluggards: “These are high-functioning people — couch potatoes don’t get Lyme disease.” Read more.
LRA AWARDS SIX NEW RESEARCH GRANTS
The LRA Board has announced six new grants worth almost $500,000 to researchers pursuing novel and promising directions in Lyme disease research.
The six researchers were selected following a rigorous process using guidelines established by the National Institutes of Health (NIH). Each proposal was evaluated by Grant Review Committee members of LRA’s Scientific Advisory Board and met the same scientific standards that the NIH applies to its own research grant review process. The resulting 2013-2014 grant awards represent projects judged to have exceptional prospects of delivering measurable advances.
LRA’s scientific agenda encompasses two areas critical to all those affected by Lyme disease: the discovery of a reliable, effective and accessible diagnostic test; and the development of effective treatments for long-term or “chronic” Lyme disease. Five of the six grants released this week reflect LRA’s two-fold scientific agenda: