TBC United was busy in January and February preparing for, presenting to, and partnering with other advocates to help members of Congress (through the Tick-borne Disease Working Group) better under the challenges and funding needs of people suffering with tick-borne illnesses. This article highlights that activity and links to valuable information for diseases sufferers.
Tick-Borne Disease Working Group Content
TBC United Board member and patient advocate Marlene Jones speaks at the 2020 Q1 meeting of the Federal Tick-Borne Conditions Working Group (TBCWG). Stricken with both Ehrlichiosis and Rocky Mountain Spotted Fever, she now advocates for better testing, therapies, cures, and education.
TBC United cofounder Dr. Jennifer Platt advocates for patients before the 2020 Federal Tick-borne Conditions Working Group in Washington, DC. View the 2-minute video excerpt here.
U.S. Veteran Kenneth Kozak shares his experience with the Veterans Administration in trying to diagnose his tick-borne conditions. It took 3 years and tremendous frustration before learning definitively what he had contracted. Kenneth Kozak was asking the Federal Tick-borne Disease Working Group (TBDWG) for better VA training.
Teen advocate Grant Roseman shares his experience of having Alpha-gal Syndrome for 8 years during the 2020 Tick-borne Disease Working Group meeting. Grant Roseman is a Missouri Science Fair award winner.
Andrea Roseman is the mother of an Alpha-gal Syndrome patient and an advocate for those with tick-borne illnesses. She represented the Alpha-gal Syndrome Community before the 2020 Tick-Borne Disease Working Group (TBDWG) in Washington, DC. She discussed the need for enhanced medical information and training.
Charlotte Meyer is an advocate who represented Tick-borne Conditions United at the 2020 Tick-borne Disease Working Group (TBDWG) meeting in Washington DC. She spoke of the important research being done among Alpha-gal Syndrome patients who hunger for more information related to their disease. She also recounted a number of patient challenges and frustrations for the committee, due to lack of education around the disease. You can view Charlotte’s presentation here.
Registration is open for the 6/21/18 Tick-borne Disease Working Group Public Meeting (TBDWG). Requests to provide public comment must be submitted via email by June 18, 2018 to firstname.lastname@example.org. In the Subject line please enter: Verbal Public Comment June 21 Meeting.