Why This Project Exists

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This project began because Alpha-gal Syndrome is not rare, not minor, and not being taken seriously enough.

 

My father lives with Alpha-gal. A close friend’s mother lost her life to anaphylaxis caused by it. His sister’s condition is so severe that she must live every day on edge, constantly worried about accidental exposure. Their lives—and many others—have been permanently changed by a disease most people have never even heard of.​

 

Recently, the news reported another death from Alpha-gal in the United States. Yet it is still often described as “rare” or “limited.” In reality, Alpha-gal and other tick-borne illnesses are affecting people globally, including at epidemic levels in parts of Africa and beyond.​

 

Despite this, research remains extremely limited.

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Doctors and scientists have tried to study Alpha-gal and related tick-borne illnesses in the past, but many projects ended quickly due to a lack of funding and, most importantly, a lack of large-scale data.​

 

I personally contacted varous USA research centers and was told that there is currently no funding for tick-borne illness research outside of Lyme disease—and that meaningful research cannot move forward without sufficient data.

 

That is the problem this project is trying to solve.

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Our Mission

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We are collecting real-world data from people who have experienced tick bites, Alpha-gal Syndrome, Lyme disease, and related conditions in order to:

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• Identify patterns and risk factors

• Document long-term and overlooked symptoms

• Show how widespread these illnesses truly are

• Support future medical research

• Advocate for better funding and awareness​

 

Every survey submitted helps build a clearer picture of what patients are actually living with—beyond what is currently documented.

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Why This Matters

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Too many people with Alpha-gal and tick-borne illnesses are dismissed, misdiagnosed, or left without answers. Many are told their symptoms are “unrelated,” “anxiety,” or “unknown.”​

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Without data, nothing changes.​

 

Without research, people continue to suffer in silence.

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This project exists to give patients a voice, create evidence, and push the medical community toward better understanding and better care.

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A Personal Commitment

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This work is personal to me. I’ve seen firsthand how devastating these conditions can be. I’ve watched people I love struggle to stay safe, to be believed, and to live normal lives.​

 

I started this project so that future families won’t have to fight as hard for answers.​

 

If you are here because you’ve been affected by Alpha-gal, Lyme disease, or another tick-borne illness—your story matters. Your experience matters. And together, our data can help create change.