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The Lyme Quilt Joins Forces with The Mayday Project


Arlington, VA – WEBWIRE

The Lyme Quilt is a labor of love that belongs to the community. Each square is unique to an individual. Collectively they commemorate the suffering, disability and devastation faced by thousands.

The Mayday Project Lyme patient advocacy group and the team responsible for the Lyme Quilt announced they are joining forces to maintain and display this ever growing symbol of the lives devastated by this disease.

The Lyme Quilt represents patients who have battled chronic Lyme, including those who have succumbed to the disease. The quilt is made up of 6” x 6” squares sewn into panels approximately 5’ x 12’. Red squares represent patients who are currently battling Lyme disease. Green squares are for those who are no longer with us.

Tami Griffin came up with the idea for the quilt in December 2013, drawing on the AIDS quilt for inspiration. After Tami became too sick to work on it, her friend Nancie Brengle stepped up and coordinated the production of the first panel with a team of volunteers from throughout the Lyme community. Kenneth Poindexter setup a Facebook page and website for the quilt and helped display it at early events.

According to Brengle, who lives in Falling Waters, WV, “The quilt is a labor of love that belongs to the community. Each square is unique to an individual. Collectively they commemorate the suffering, disability and devastation faced by thousands.”

You can submit a square for yourself, or for someone else. The Lyme Quilt website provides detailed instructions.

The quilt was first publicly displayed May 20-21 2014 at the Mayday Project protest at IDSA headquarters in Arlington, VA. Since then, the quilt has been displayed at Lyme related events throughout high endemic areas of the Mid Atlantic, New England and parts of Canada.

October 9-10, the Lyme Quilt will make its first ever appearance on the west coast at a collaborative rally and candlelight vigil at the IDWeek medical conference in San Diego, CA. Co-organizers include The Mayday Project, LymeDisease.org, and The San Diego Lyme Disease Support Group.

IDWeek is organized by the Infectious Diseases Society of America (IDSA).

Advocacy groups say the IDSA guidelines for Lyme disease misrepresent science and restrict access to care for patients with chronic Lyme disease. They say additional harm occurs when patients are denied insurance coverage for evidence-based treatment options that could help them regain their health.

The multi-day rally and candle light vigil are part of a series on ongoing protests against the IDSA guidelines for Lyme disease. All events will take place in front of the San Diego Convention Center.

For more information visit: http://www.facebook.com/events/1457255221263418

About the Mayday Project
The Mayday Project is a 501(c)3 nonprofit formed by a group of volunteers who have been touched by Lyme disease in many ways. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research.

For more information, visit http://www.themaydayproject.org


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 lyme disease
 lyme guidelines
 IDSA
 IDWeek
 chronic lyme


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