About Us

The Alpha-gal Information Website

This website is being created by people with alpha-gal syndrome in order to:

  • Raise awareness about alpha-gal syndrome and
  • Provide information about AGS for our community, friends, families, media, and healthcare providers.

We are not physicians or medical professionals. We cannot provide medical advice, nor do we seek to.

We are not affiliated with any organization, and we do not profit or seek to profit from this website. 

The AGS Awareness Campaign

The Alpha-gal Information website is one component of the Alpha-gal Syndrome Awareness Campaign, an effort to raise both the general public’s and healthcare providers’ awareness about AGS. The campaign will include:

  • The creation of a comprehensive, informational website
  • The creation of awareness materials: informational posters, brochures, t-shirts, etc.
  • A social media campaign: Facebook, Twitter, Instagram, and Youtube
  • A grassroots campaign, with a focus on at-risk communities
  • Media outreach, through press releases, articles, op-eds, etc.

Contributors to the AGS Website and Campaign

The following people have contributed to the development of the AGI website, the broader campaign, or both.

Sharon Forsyth
AGI Website, Creator and Director
Awareness Campaign, Coordinator

Sharon has three sons, Darwin, Adam, and Robin. She lives in DC with her biologist husband, Adrian Forsyth, and their youngest son, Robin. She is passionate about conservation and is on the board of American Bird Conservancy. In her spare time, Sharon enjoys birding and looking for rare butterflies, which is how she picked up the ticks that triggered her alpha-gal syndrome.

Sharon knew about AGS before she got it, because her brilliant ornithologist friend, Reid Rumelt, had told her about it. Thanks to Reid, she understood immediately what was happening the first time she experienced anaphylaxis after eating a hamburger. This spared her a lot of suffering. Thank you, Reid!

Darcie Clements
Website, Writer
AGS Blogger
Alpha-gal in Depth was republished from Darcie’s blog, Alpha-Gal Syndrome

Annia Contreras
Testimonials, Creator and Director
Awareness Materials, Designer
A Ticked Alpha Gal FB Page, Creator and Admin

Annia Contreras is just one of many whom suffer from Alpha-Gal. Annia, a forty-nine-year-old wife to Larry and mother of Brian and Briannia resides in Tecumseh Mo. She loves being creative and crafty. She was diagnosed with AG in April 2018. She then realized just how unknown this syndrome was in her area. She has a God given gift of empathy with the desire to help others and felt people should not have to suffer in silence. Annia decided to give AG patients a voice so she created a Testimonial page and group. Here anyone can let their own voices be heard by sharing their experiences with AG in the hope it will help many. This and a few other creative ideas are her contribution to this website.

Annia created the website testimonials page, testimonials group, and designed awareness materials.

Melissa Davison Doherty
Facebook Support Group Compiler

Matthew Hendy
Researcher
Principal/Owner at Green Heron Information Services & Green Heron Research Services

Matthew Von Hendy, MLS is owner and principal of Green Heron Information Services and Green Heron Research Services. He is an accomplished research librarian with more than 20 years of professional experience. He has expertise in locating scientific, technical, health and government information.

Matthew is compiling and categorizing evidence-based research which will be available in  the resource section of the website.

Rachel McAfee Jones
AGI Website, Researcher and Writer (Healthcare)

Rachel is a Clinical Research Associate residing in Northeast Kansas. Her passion for research is what led her to a proper medical diagnosis and then drove her to help others do the same. Rachel received her first tick bite and began experiencing symptoms in 2002 but was not diagnosed with AGAS until 2013. The years in between were full of a multitude of health issues, ER visits, and healthcare team members who were unaware AGAS existed. Rachel’s goal is to help educate both individuals and healthcare staff on the broad-spectrum diagnosis of AGAS and what that means for the individual and/ or patient.

Crystal Norton
AGI Website, Editor
AGI Website, Researcher
Awareness Materials, Designer

Crystal Norton resides in Burlington, NC and is a mother to two children and one fur baby. She has a background in psychology and art, and enjoys all things creative and enjoying the beauty of nature. She has had AGS likely since 2004. She highly suspected AGS in 2016 and found the answers to her ailments on the internet as “red meat allergy.” She was not diagnosed until 2017, when doctors did not believe it was a real illness until there were positive test results.

Julie Smith LeSueur
Alpha Gal VA, Co-Admin
Alpha Gal Syndrome Virginia Awareness Campaign
AGI Website, Researcher (Personal care and household products)
Awareness Materials, Designer

Julie Smith LeSueur lives in Richmond, VA where she was first exposed to Alpha Gal in 2014, experiencing gastrointestinal symptoms in 2014. Later that same year, an exposure to nymph ticks in southeastern MD, elevated reactions to repeated, full-blown multi system anaphylaxis. A full year later in late 2015 Julie was finally diagnosed with alpha-gal syndrome. Before her life was changed, she was an avid adventure traveler, putting on a backpack and drifting through South Africa, Mexico, Europe and Central America, never having an inkling that a local tick would become the ultimate nemesis.

Julie hopes to regain her health in order to return to volunteer pet transport work, reestablish her photography hobby and maybe one day fulfill another bucket list travel destination. She can be found on Facebook where she is Co-admin of the Alpha Gal VA page and spreading awareness at various venues through the Alpha Gal Syndrome Virginia Awareness Campaign.

Jennifer Burton
Alpha Gal Encouragers – NW Arkansas, Founder
AGI Website, Researcher
Awareness Materials, Designer
Patient Recommended Physicians, Compiler

Eric & Jennifer Burton moved to NW Arkansas in 2004. Jennifer is a busy wife, mother & grandmother. She has worked for NorthWest Arkansas Community College for 14 years in the Information Technology Dept as the Admin Analyst to the CIO & manages the college’s annual IT budget.

All her life she’s had a love for cooking, gardening, camping & the outdoors. But in Sept of 2016 Jennifer’s health took a turn for the worse. For the next 6 months she lost time from work suffering with extreme GI pain, chronic fatigue, inflammation, swelling, outbreaks of hives, then anaphylaxis. The doctor was unable to find the cause. Then Jennifer barely survived a 4th anaphylaxis attack on Feb 28, 2017. Several blood tests & doctor’s appointments later, she was told she had become highly allergic to beef, pork & lamb. The final diagnosis – Alpha Gal Syndrome (AGS).

The diagnosis is life altering. For Jennifer it doesn’t just mean stop eating mammal meats, cheese & dairy, which is hard enough – it means researching all other forms of mammal you never thought of. In prescriptions, gelatin capsules, candy, personal care products, makeup. The list is endless and daunting. Jennifer and Eric serve in the Care & Outreach ministries.

Jennifer created emergency medical/contact card and restaurant cards.

Tina N Bryan Decker
Apps Researcher

Kelly Dickens-Kinsella
AGI Website, Writer (Food)

Kelly Kinsella has lived in NW Arkansas since 2006. In August of 2017, she was exposed to 100+ seed tick bites and in October was diagnosed with Alpha Gal and Rocky Mountain Spotted Fever. Up until her diagnosis she was an active Crossfit coach who helped people with nutrition and fitness. Staying active and trying to figure out what to eat was getting more difficult over the years. Her Alpha Gal symptoms were mostly GI related along with chronic hives and rashes. In September 2018, she was then diagnosed with H. Pylori, a stomach bacterium. In the last year she has been on antibiotics for about half of that time. This led to a series of health issues related to poor gut health. During this journey Kelly was moved by the lack of dietary support for Alpha Gal. This allergy can lead to fear of food, under-eating and very poor food choices trying to fill the void of foods that have been taken away from us. The more she started to take a whole food approach the more she felt better. Kelly wants to take this passion for helping others with Alpha Gal and show them we can feel good. Teach them to focus on what foods we CAN eat and not to focus on what’s been taken away. Kelly is completing the Nutritional Therapy Consultant program and will be ready to help people with Alpha Gal gain the knowledge and confidence through holistic nutrition to handle life with this allergy.

Lee Ann Kendrick
AGI Website, Editor
AGI Website: Content Designer, Researcher, and Writer (Healthcare)
AGI Website, Director of Website Development

Lee Ann Kendrick lives in Fayetteville, AR, is a mother, and a grandmother of two girls. She is the owner at Lake Designs Associates, a small graphic design and marketing agency, focusing primarily on web development and branding. After years of health issue mysteries, she found reference to alpha-gal after keeping a food diary following allergic episodes, and requested testing in 2017. Lee Ann has a passion for cooking, and has embraced alpha-gal as a challenge to keep finding ways to cook meals that she loves.

Linda P
AGI Website, Writer (History of AGS)
AGI Website, Editor (AGS Physician Fact Sheet)

Linda wishes to remain anonymous.

Wendy Rich
Joplin Area Alpha Gal Awareness, Co-founder
T-shirts, Designer

Wendy Rich is a 45-yr-old Social Service Supervisor and runs an online Facebook store called Wink’s. After diagnosis of AG in March 2019, Wendy co-founded Joplin Area Alpha Gal Awareness.

Dori Svardal
AGS Emotional Support

Dori Svardal is a 45-year-old female that lives in Springfield, Missouri. She has been a police dispatcher for 20 years. She enjoys writing, painting, playing with her furbaby and visiting with friends. In 2015, after suffering with an unknown illness for 9 months, she suspected she had Alpha Gal Syndrome through her own research. It was then confirmed through a blood test ordered by a reluctant allergist. She values the many wonderful friendships she’s made, despite the fact that AGS was often the thing that brought many of those friends together.

Summer Carroll
TickedOffMastCells, Founder
Awareness Materials, Designer

Summer is a 30 year old from Alabama who contracted Rocky Mountain Spotted Fever, Lyme Disease and Alpha-Gal Syndrome from a tick bite and due to the tick-borne illnesses going undiagnosed and untreated for years, it caused her to develop a condition called Mast Cell Activation Syndrome which almost cost her, her life in early 2018.  

Not only has Summer tested positive for tick-borne disease, her husband is also battling Rocky Mountain Spotted Fever and Alpha-Gal Syndrome along with their 11 year old son who has recently tested positive for Alpha-Gal Syndrome as well. 

Knowing first-hand how devastating tick-borne illnesses can be, Summer has committed to help spread awareness on social media in hopes to educate the medical community and others on the dangers of tick-borne disease and the signs and symptoms that can accompany them.

Summer also has a website that provides information and resources on Mast Cell Activation Syndrome and Tick-Borne Disease.

Beth Diggs
AGI Website, Researcher (Healthcare)

Beth Diggs is a wildlife photographer and published author residing in beautiful coastal North Carolina. She graduated from Roanoke College in Virginia with a degree in biology and also attended the Northern Michigan University graduate program studying education. Beth received her certification and went on to teach science, music, and martial arts to students of all ages. She is passionate about wildlife conservation and is a member of many professional organizations that help protect animal habitats. Beth’s photos have been featured by Audubon, InsideClimate News, Birds and Blooms magazine, Wildlife in North Carolina Magazine, and many non-profit organizations and media accounts that promote conservation and education.

Beth’s hope is that people will become emotionally invested in wildlife through her photography and that they will want to protect those animals through habitat conservation. Her dream is to promote these sanctuaries and protect the earth for future generations to come.  She is an avid birder and happened to contract alpha-gal on one of her birding and photography adventures. She discusses her struggle with alpha-gal in her latest book, “Menopausal Master,” which is described as a “defining narrative dedicated to readers seeking the answers to questions of faith, belief and opinions on the individual and societal scale.”  The book is Beth’s personal mission to help readers overcome adversity and become more understanding of differing values and opinions.

Tami McGraw
AGS CafePress Store, Creator and Director
Awareness Materials, Designer

Tami McGraw lives in beautiful Pittsboro, NC with her husband and youngest son, Michael. She loves gardening, CrossFit and cooking. Her family includes four children and three grandchildren. After years of complex, confusing health problems and multiple incorrect diagnoses, she was finally tested for Alpha Gal at her request. She has been vocal in Alpha Gal awareness for years now, trying to help protect others from acquiring this crazy, life changing allergy.

Dr. Tina Merritt
Allergy Doctor NWA
Tina Merritt, MD

Dr. Merritt has done research on Alpha-gal, an allergy to beef, pork, and gelatin related to tick bites, and is part of the Arkansas Alpha-gal Task Force. She is the director of White Cell Support Group, a nonprofit support group for patients with primary immune deficiency. Dr. Merritt is a noted speaker for asthma, allergy and immune deficiency. She participates in the Food Allergy Research and Education Walk every year and the National Asthma Screening for the past 16 years.

Jon Smith
Social Media Campaign, Director
Multimedia Producer
Manages the AGA Youtube Channel and Twitter accounts.

Jon lives in southeast Virginia on the Chesapeake Bay, where he contracted Alpha-Gal. He is an Army combat veteran, having served for 8 years in the communications field (bringing the telephone and the internet to the warfighter), all of it overseas. After separating from the military, Jon continues in public service, currently as Director of Risk Management, which is all too fitting since he’s been managing his alpha gal risk since before 2012.

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Holly Tuten
Vector Ecologist
AGI Website Writer (Ticks) 

The Following People Contributed Their Stories for the AGI Website:
Annia Nelson Contreras, Christopher Scott, Bethany Welch, Samantha Gross, Dori Svardal, Annie Mae King, Julie Smith LeSueur, Tracy Gaskins, Crystal Norton, Charlotte Meyer, Claiborne Taylor, and Heather Posey Johnson. 

The Following People Contributed Photos for the AGI Website:
Sharon Forsyth, Melissa Appel, Malin Lundén Schmid, Jai Johnson, and Sandy Wiseman.

Additional AGI Website and AGSA Campaign Contributors Include:
Paul Smith, Astrid Smith, Elizabeth Elmer, Rene Morcom, Mark Morcom, Malin Lundén Schmid, and Chip Doss.