Spring into TBD education, research, and advocacy!

Help us celebrate Lyme and Tick-borne Disease Awareness Month.

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2024 Highlights to date:

Center for Lyme Action

For the fifth year, TBC United joined the Center for Lyme Action and nearly 400 advocates to speak with members of Congress and their staff about the continued increase in tick-borne diseases and conditions, and requested appropriations of 5 key areas of need detailed below.

1. Fully fund the Kay Hagan Tick Act (Request: $30M)
2. Fund HHS LymeX Innovation Accelerator (Request: $5M)
3. Fund Lyme and Tick-borne disease prevention programs (Request: $30M)
4. Fund NIH NIAID Lyme and Tick-borne Disease and Conditions Research (Request: $135M)
5. Fund Peer-reviewed Tickborne Disease Research (Request: $9M)

• Read more about the 5 Lyme Appropriations Asks
• FY25 Lyme Appropriations Summary

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TBCU held its 4th International Online AGS Symposium with FREE CME credits available

This symposium gathered some of the world’s leading medical researchers, scientists, and individuals affected by Alpha-gal Syndrome to exchange insights, share valuable knowledge, and promote awareness and understanding of this condition. Nearly 600 registrants from 30 states and 17 countries signed up to attend. For the live symposium, 75% of health care attendees said they would implement changes in their practice (some of the others indicated too soon to respond) regarding treatment, quality of care, and patient safety protocols.

Please share the 6 hour CME opportunity with your healthcare providers – participants will learn the latest research findings, diagnosis, and key areas of support required for AGS patients of all ages.

Save the date for next year’s event February 8, 2025.

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American Academy of Allergy, Asthma, and Immunology (AAAAI)

TBCU’s Dr. Jennifer Platt and Pamela Traina attended this year’s AAAAI conference in Washington D.C. February 23-25 and had a booth in the Exhibitor Hall. Numerous healthcare providers stopped to visit and discuss Alpha-gal Syndrome (AGS) with us. We noted some important differences in knowledge about AGS over last year’s conference: substantially more people had heard of AGS (about 5% were unaware, and they were not providers), and almost every healthcare provider we talked to has now diagnosed at least one patient with AGS. In addition to all the information shared, we attended several fantastic presentations on the latest research! Watch here for more to come.

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FARE’s 2024 Courage at Congress fly-in

In March, Pamela Traina, the Advocacy Coordinator at TBC United, spoke at FARE’s 2024 Courage at Congress fly-in. During the event, she educated advocates and participants about Alpha-gal Syndrome (AGS) and emphasized the importance of promptly reporting new cases.

Noteworthy Acts and Bills:

• The Adina Act, H.R.4263
• Dillon’s Law, H.R.3910
• Recognize AGS Act, H.R.7373
• Epipen Act, H.R. 6965
• Protecting Children with Food Allergies Act S. 121

We extend our gratitude to the FARE team, advocates, and legislators who supported H.R. 7373, Recognize AGS Act. Additionally, we value the chance to contribute to other vital legislative initiatives that benefit the broader food allergy community. For H.R. 7373 updates please visit https://www.congress.gov/bill/118th-congress/house-bill/7373. 

For further insights into the Food Allergy Research and Education (FARE) organization, visit foodallergy.org.

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Other tidbits:

TBC United signed an MOU with FARE (Food Allergy Research and Education), which will allow us to leverage relationships for education, outreach, research, and advocacy across their organization. Our first event was a webinar for FARE’s audience, attended by 500 participants and provided free CMEs to providers. Click to view and share the video training, “Taking A Bite Out Of Alpha-Gal Syndrome: How To Prevent And Manage Tick-Borne Food Allergy.”

TBC United launched AlphaGalLiving.com in support of the AGS community. Alpha-Gal Living will offer a hub of free trusted resources and information, plus connections with each other. Our mission is to provide a simple, easy-to-access space that you can use every day to live a full life with Alpha-gal.

AGS Congressional Briefing: The newly formed Alpha-gal Alliance Action Fund (AGA) held the first-ever Congressional briefing, Alpha-gal Syndrome: an Emerging Epidemic, on May 2. Updates can be found online at Alpha-gal Alliance Action Fund. The briefing was co-sponsored by Rep. Abigail Spanberger and Rep. Andrew Garbarino. Get updates on the progression of their important bill, the Recognize AGS Act, by signing up for alerts at https://www.congress.gov/bill/118th-congress/house-bill/7373.”

Military Readiness and Lyme Disease Congressional Lyme Series – Join Center for Lyme Action for a Congressional Lyme Series event this June 3rd, by registering here. Keynote address by U.S. Dept. of Defense. Remarks by Members of Congress with the feature speaker and tick-borne disease advocate, Col. Nicole Malachowski, USAG Ret.

AGS Survey – To date we’ve had over 4,000 response to the largest ongoing AGS patient survey. To take the Alpha-gal Patient Experience Survey click here.

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your contribution Matters.

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Thanks for all you do to support Tick-borne Conditions United – we could not do this work without you.

Warm regards,

Beth and Jennifer

Beth Carrison
CoFounder and Director of Advocacy

Jennifer Platt, DrPH
CoFounder and Director of Programs