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 discusses the challenges of daily life for a person with a tick-borne illness, including the fear that a hotel or hospital cafeteria will include hidden meat products.
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.
Tick-Borne Conditions United Cofounders Dr. Jennifer Platt and Beth Carrison team with TBCU Board Member Dr. Tina Merritt to provide guidance to those with Alpha-gal Syndrome on what ingredients to avoid in food, medicines, and other personal care products. Diagnosis is also covered and the key areas of support required for AGS patients of all ages. Additional focus is on dietary needs, how to be an ingredient detective, pharmaceutical considerations, and social challenges.
Chelmsford TV cautions residents about the dangers of the Lone Star Tick and Alpha-gal Syndrome in this interview from May 23, 2019 with TBC United Cofounder Beth Carrison, INHC (and Chelmsford, MA resident). TBC United Cofounder Dr. Jennifer Platt was also present. Interview starts at 2:08 and ends at 3:48 of the video.
TBC United Cofounders Dr. Jennifer Platt and Beth Carrison, INHC, lead the second annual international discussion on Alpha-gal Syndrome and other tick-borne conditions including Lyme Disease, STARI, and more. This 90-minute webcast includes updates from medical experts including Dr. Tina Merritt and Dr. Heather Szerlong, as well as TBC United cofounders. The second International Alpha-gal Symposium was held in May 2019.