Advocate Shares Experience Raising Awareness and Advancing Research for Congenital Lyme Disease
Burtonsville, MD – WEBWIRE – Thursday, May 9, 2024
While it is widely accepted that Lyme disease is spread by a tick bite, it is less well known that the agent of Lyme disease, Borrelia burgdorferi, can cross the placenta, both infecting, and causing harm to, unborn children.
Bruce Fries of the Patient Centered Care Advocacy Group has been advocating for patients with Lyme disease since 2014.
In the article, Raising Awareness and Advancing Research for Congenital Lyme Disease, he shares the story of how he organized an ad hoc group that became known as Mothers Against Lyme and worked with NIH to advance research on congenital Lyme disease.
The article provides a behind the scenes view into in organizing a webinar with NIH to promote opportunities for funding and support for research on congenital Lyme disease. It also includes details on a request for retraction of false information on congenital Lyme in the IDSA/AAN/ACR 2020 guidelines for Lyme disease.
Following the work with NIH and the retraction request, Mothers Against Lyme transitioned to a meetup group sponsored by Project Lyme and led by co-chairs Jane Marke and Isabel Rose.
Fries was pleased to see Mothers Against Lyme come full circle and live on as an initiative of Project Lyme, which provided the spark that got it going.
He continues his work, raising awareness and advancing research for congenital and pediatric Lyme disease, through the Patient Centered Care Advocacy Group.
About the Patient Centered Care Advocacy Group
The Patient Centered Care Advocacy Group is a 501(c)3 nonprofit organization that advocates for improved care and access to care for chronically ill patients who are underserved, marginalized and discriminated against by the medical establishment. Its current focus is raising awareness about the risk and impact of congenital Lyme disease and collaborating with other nonprofits and federal agencies to advance research.