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Tick-borne Disease Working Group (TBDWG) Q1 2020 Highlights on Alpha-gal and Other Conditions

Tick-borne Disease Working Group (TBDWG) Q1 2020 Highlights on Alpha-gal and Other Conditions

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.

He Calls Me ‘The Tick Doctor’

The S1657 Kay Hagan TICK Act is currently making its way through the halls of Congress. It will provide millions of dollars for desperately needed research, surveillance, and education. To help honor Senator Kay Hagan and others with tick-borne illnesses, please call your Senators to ask for their support of the S1657 Kay Hagan TICK Act.

A Mysterious Allergy and Cloned Pigs (News Article: IndyWeek)

A Mysterious Allergy and Cloned Pigs (News Article: IndyWeek)

A Mysterious Allergy, the UNC Researcher Who Helped Figure It Out, and the Cloned Pigs That Could Be the Answer. This IndyWeek article from November 2019 covers the story. It includes the important research of the University of North Carolina’s Dr. Scott Commins, plus the effort by Revivicor to produce an Alpha-gal safe pork product. Includes comments from Tick-borne Conditions United Cofounder Beth Carrison, INHC.

Remembering Senator Kay Hagan

Remembering Senator Kay Hagan

Senator Kay Hagan contracted Powassan virus from a tick bite. The former North Carolina Senator also dealt with encephalitis, and suffered from debilitating neurological symptoms which led to her death this week. To help honor her struggle, an effort is being pursued to secure additional research and funding through the TICK Act. Here’s how to get involved.

A Mysterious Allergy and Cloned Pigs (News Article: IndyWeek)

Tick-borne Allergy On The Rise In Chatham (News: Our Chatham)

Chatham County has become a hotspot for Alpha-gal Syndrome and other tick-borne illnesses. The Chatham County Public Health Department says the county has one of the highest rates of tick-borne illness in North Carolina at 8.3 percent. Of that group, just under 15 percent were diagnosed with Alpha-gal syndrome. Dr. Jennifer Platt, Cofounder of TBC United and CEO of TickWarriors was interviewed to provide perspective on these concerning trends.

Your Voice Can Be Heard!

Your Voice Can Be Heard!

Tick-Borne Conditions United (TBC United) co-founder, Beth Carrison, INHC has been appointed to the Alpha-gal Syndrome (AGS) Subcommittee of the 2020 Tick-borne Disease Working Group (TBDWG). This means that individuals affected with Alpha-gal Syndrome can have their concerns and needs potentially raised before Congress.

A Mysterious Allergy and Cloned Pigs (News Article: IndyWeek)

Is Alpha-gal Syndrome Lyme 2.0? (News: Lowell Sun)

The Lowell Sun interviews TBC United Cofounder Beth Carrison about her challenging journey to discovery that she had the Alpha-gal meat allergy. Too little is known about this debilitating condition by medical professionals, so considerable personal research and education is often required by those afflicted in order to protect oneself. The article also recounts Beth Carrison’s process of teaming with Dr. Jennifer Platt to cofound Tick-Borne Conditions United. 

Alpha-gal in Black-Legged Tick Saliva

Alpha-gal in Black-Legged Tick Saliva

ALPHA-GAL IN BLACK-LEGGED TICK SALIVA: STUDY REVEALS POTENTIAL IMPLICATIONS FOR LYME PATIENTS In the United States several studies associate the Lone Star tick (Amblyomma americanum) with an allergic reaction to “red” meat due to the presence of the carbohydrate...

Vaccines – Are they Alpha-gal Safe?

Vaccines – Are they Alpha-gal Safe?

Whether you support the CDC recommended vaccines or not, their ingredient list is potentially a concern for some of those diagnosed with Alpha-gal (Allergy) Syndrome). Will the Lyme vaccinations mentioned in the news lately be mammal free? After finding many of the vaccines contained one form or another of mammal derived ingredients, we raised this as a concern to the “Working Group” on February 12, 2018.

TV, VIDEOS & WEBCASTS

Covid-19 and Alpha-gal Syndrome Webcast (032920)

Covid-19 and Alpha-gal Syndrome Webcast (032920)

TBC United Cofounders Dr. Jennifer Platt and Beth Carrison, INHC, are joined by Dr. Tina Merritt to discuss important precautions for Alpha-gal Syndrome patients regarding Covid-19 (Coronavirus). Included is a discussion around medications, how to communicate with healthcare professionals during the pandemic, and where to find additional resources. This audio recording was from a March 29, 2020 webcast.

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Tick-Borne Conditions and Veterans Experience

Tick-Borne Conditions and Veterans Experience

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.

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Parent Advocate Andrea Roseman

Parent Advocate Andrea Roseman

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.

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Patient Advocate Charlotte Meyer

Patient Advocate Charlotte Meyer

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.

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Alpha-Gal Syndrome: From Diagnosis to (Ingredient) Detective (FARE: Training)

Alpha-Gal Syndrome: From Diagnosis to (Ingredient) Detective (FARE: Training)

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.

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Alpha-gal Feature: Chelmsford TV News Break

Alpha-gal Feature: Chelmsford TV News Break

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. 

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PODCASTS & RADIO

Kay Hagan Tick Act Interview: Dr. Jennifer Platt (Radio: KUAF)

Kay Hagan Tick Act Interview: Dr. Jennifer Platt (Radio: KUAF)

Jennifer Platt, DrPH, cofounder of Tick-Borne Conditions United, is interviewed by KUAF Radio on the recently passed Kay Hagan Tick Act. The law was named after U.S. Sen. Kay Hagan of North Carolina who died last autumn due to complications from a tick-borne illness. The measure will facilitate development of a national strategy to combat tick diseases and fund medical research and educational outreach.

Alpha-gal Syndrome a.k.a. The Meat Allergy (Podcast with Lyme Ninja Radio)

The complexities of Lyme Disease (Podcast with LymeVoice)

Podcast discussion on the complexities of Lyme Disease featuring Dr. Jennifer Platt, Cofounder of Tick-borne Conditions United and CEO, TickWarriors, speaking with Aaron & Sarah Sanchez of LymeVoice. Released: Nov 26, 2019. How to protect people, pets, and property from ticks. Dr. Jennifer Platt has decades of experience in public health and environmental program development. She has led the creation of nationally recognized, award-winning education programs and has spoken extensively to audiences of all sizes.

BROCHURES

Tick-Borne Conditions United Brochure – Free Download

Tick-Borne Conditions United Brochure – Free Download

TBC United provides the latest education about tick-borne conditions to healthcare professionals, organizations, and the general public through online resources, webcasts, white papers, and in-person educational programs. Download this free brochure which offers an overview of TBC United services and contact information.