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.
Tennessee
Doug Swafford
Doug’s personal experience with alpha gal syndrome began early in 2023 when he was diagnosed after years of unexplained symptoms.
Doug has a strong desire to make AGS a mandatory reportable condition in the state of Tennessee. He is also interested in raising awareness about the diagnosis, treatment, and prevention of tick-borne diseases, including AGS.
Contact Doug at Douglas.swafford@yahoo.com
Jody Zorsch
Jody is newly diagnosed with alpha-gal syndrome and is active in raising awareness about alpha-gal syndrome and it’s growth. Jody has a particular interest in making alpha-gal syndrome a reportable condition in Tennessee.
Contact Jody at jzorsch@gmail.com
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
West Virginia
Leisa Moten
Leisa Moten, co-founder and advisor of ALIVE Animal Services Group, Inc., a 501(c)(3) non-profit established in 2012 as an animal advocacy group to give help and hope to neglected, abused, abandoned and those slated for euthanasia animals in the rural mountains of Southern West Virginia.
Leisa’s alpha-gal syndrome journey began in 2017 when her husband began having unexplained rashes, severe GI distress, and anaphalaxis several times a week. He was diagnosed with alpha-gal syndrome through personal research and insistence that his doctors test him. Then, in 2022, Leisa presented with crippling arthritis, heart palpitations after consuming dairy, and middle of the night panic attacks. Tests revealed that she, too, had alpha-gal syndrome. Because of the difficulties and delays in care alpha-gal syndrome caused during her husband’s battle with terminal colon cancer and a heart attack requiring Stent placement Leisa feels passionate about legislation making Alpha-gal a reportable condition in West Virgina and a mandatory declared allergen in food and medical products.
Contact Leisa: magsconnection@gmail.com