State-level resources
Who is leading policy efforts in your state?
The following organizations and individuals have taken the lead in organizing state-level advocacy efforts, in addition to their other work. We recommend coordinating any state-level efforts with these advocates.
Arkansas
Jennifer Burton
Founder, Alpha Gal Encouragers, Inc.
Alpha Gal Encouragers, Inc. is a 501(c)3 nonprofit advocacy, support, and outreach group with a Christian perspective and vision that serves those diagnosed with alpha-gal syndrome, their families, friends, and advocates.
Jennifer has taken a lead in advocating for policy solutions for the alpha-gal community in Arkansas. She has created a number of useful advocacy resources, including contact information for lawmakers in AR and policy priorities.
Arkansas was the first state to make alpha-gal syndrome a mandatory, reportable condition.
Join the Alpha Gal Encouragers– NW Arkansas Facebook support group for more information.
Contact Jennifer: alphagalencouragers@gmail.com
Maine
Beth Carrison
Cofounder and Director of Advocacy, Tick-borne Conditions United
Tick-Borne Conditions United is a nonprofit 501(c)(3) corporation devoted to the identification, diagnosis, treatment, and prevention of tick-borne diseases.
In 2018, Ms. Carrison co-founded Tick-Borne Conditions United (TBC United), with Dr. Jennifer Platt. In 2019 Ms. Carrison was appointed as a patient advocate to the federal 2020 Alpha-gal Syndrome Subcommittee, which serves the federal Tick-Borne Disease Working Group (TBDWG) under the Department of Health and Human Services (HHS).
In addition to her efforts at the national level, Beth has taken a lead in advocating for policy solutions for the alpha-gal community in Maine.
Contact Beth:
https://www.tbcunited.org/about-tick-borne-conditions-united/contact-us/
North Carolina
Jennifer Platt
Cofounder and Director of Programs, Tick-borne Conditions United
Tick-Borne Conditions United is a nonprofit 501(c)(3) corporation devoted to the identification, diagnosis, treatment, and prevention of tick-borne diseases.
Dr. Platt’s personal experience with tick-borne illness led her to create TickWarriors in 2016, which provides eco-friendly tick protection for people, pets, and property. The pervasive need for education and awareness led Dr. Platt to co-found Tick-borne Conditions United in 2018 with Beth Carrison.
In addition to her efforts at the national level, Jennifer has taken a lead in advocating for policy solutions for the alpha-gal community in North Carolina.
Contact Jennifer:
https://www.tbcunited.org/about-tick-borne-conditions-united/contact-us/
Oklahoma
Dee Nash
Founder, Red Dirt Ramblings
Dee Nash is a passionate gardener and award-winning author based in Oklahoma. She overcame bad soil, strong winds, and even a wildfire that swept through her neighborhood. Now, she’s facing the challenges of alpha-gal syndrome while still managing her large rural garden and garden coaching business.
For more information, see her Red Dirt Ramblings website featuring alpha-gal syndrome.
Virginia
Debbie Nichols and Candice Matthis
Founders, Two Alpha Gals
The mission of Two Alpha Gals is to serve as guides to empower others to navigate and live a fulfilled life with or without AGS. We strive to help each other develop a new normal by increasing awareness, providing access to supportive research, inspiring advocacy, and cultivating community.
Candice and Debbie are taking a lead in in advocating for policy solutions for the alpha-gal community in Virginia. They participated in the Virginia Tick-borne Disease Working Group and provided key support for HB 93, a bill written by Del Otto Wachsmann that would make alpha-gal syndrome a reportable condition in Virginia.
Contact Debbie and Candice: thegals@twoalphagals.com