When someone you love is diagnosed with a rare disease like Moya Moya, you quickly realize how lonely it can feel. Questions outnumber answers. Resources are scarce. And awareness? Nearly nonexistent. That’s why advocacy matters. Every post shared, every law passed, and every step walked in honor of someone affected brings visibility to a disease that too often hides in the shadows.

If you’re unfamiliar with the condition itself, we strongly encourage you to read our foundational guide here: What is Moya Moya Disease? Symptoms, Causes, and Treatment Options . It covers the science behind Moya Moya, its symptoms, how it’s diagnosed, and why early intervention matters so much.

In this post, we’ll focus on the real-world advocacy efforts that are putting Moya Moya on the map—from local legislation to global awareness campaigns, and how you can be part of this powerful movement.

Why Advocacy Matters for Rare Diseases Like Moya Moya

When a condition affects only a small portion of the population, it often doesn’t get the medical research, public awareness, or policy support it desperately needs. Advocacy is how we change that. It’s how parents, patients, doctors, and entire communities fight for better outcomes, earlier diagnoses, and ultimately, a cure.

✅ Many primary care physicians have never heard of Moya Moya.
✅ Early signs are often misdiagnosed without proper education.
✅ Families navigating Moya Moya often feel isolated due to the lack of widespread awareness.

But the good news? That’s starting to change—and it’s thanks to people just like you.

Organizations That Are Leading the Fight

MoyaMoya Foundation

The MoyaMoya Foundation is a volunteer-run nonprofit dedicated to improving awareness, supporting families, and funding research for Moya Moya disease. They’re known for:

✅ Financial aid for families going through treatment
✅ Hosting webinars and educational seminars
✅ Publishing the inspiring book “Faces of MoyaMoya Disease”
✅ Partnering with Sanford Research CoRDS Registry to build the world’s largest patient data registry for Moya Moya

Credit Unions Kids at Heart (CU Kids at Heart)

CU Kids at Heart is a Massachusetts-based nonprofit that funds neurological research, with a specific emphasis on pediatric Moya Moya. Their impact includes:

✅ Annual participation in the Boston Marathon to fundraise for Boston Children's Hospital
✅ Legislative partnerships that helped designate May 6 as Moya Moya Awareness Day in Massachusetts
✅ A 20+ year history of raising over $7 million for medical research

World Moyamoya Alliance

The World Moyamoya Alliance connects patients, families, and professionals around the globe. Their mission is to educate, support, and fund solutions that reduce the risk of stroke and neurological damage.

✅ Distributes medically reviewed materials worldwide
✅ Supports rare disease legislation
✅ Maintains a growing database of international specialists and centers of excellence

Progress in Policy: Moya Moya Awareness Days and More

One of the most visible markers of advocacy is when it makes it to the legislative floor. Multiple U.S. states have already recognized Moya Moya with official proclamations—many thanks to parent-led campaigns and nonprofits who wouldn’t take “no” for an answer.

Massachusetts

Thanks to years of hard work by CU Kids at Heart and families of Moya Moya patients, Massachusetts passed a law declaring May 6 as Moya Moya Disease Awareness Day in 2022.

Connecticut

Led by the MoyaMoya Foundation, Connecticut followed suit, making May 6 the official date to honor and advocate for those with the condition.

California

In 2017, California introduced ACR 73, officially recognizing Moya Moya Awareness Day and opening doors to additional awareness initiatives statewide.

World Moya Moya Awareness Day

May 6 isn’t just significant in the U.S. — it’s recognized globally as World Moyamoya Awareness Day. Across the world, landmarks are lit in blue, families share their stories online, and hospitals host webinars to educate physicians. It’s a day to bring visibility to the invisible and make noise for those whose voices often go unheard.

This annual event is supported by organizations like Global Genes, NORD, and countless local rare disease coalitions.

How You Can Help

You don’t need to start a nonprofit to make a difference. Here are simple but powerful ways you can support advocacy efforts:

✅ Share social posts during Moya Moya Awareness Month (May)
✅ Write to your local representatives asking for state recognition of Moya Moya Awareness Day
✅ Fundraise through races, birthdays, or awareness events
✅ Volunteer with nonprofits like The MoyaMoya Foundation or CU Kids at Heart

Your voice is powerful. Use it for someone who may not have theirs yet.

Final Takeaways

✅ Moya Moya advocacy is being led by patients, parents, and passionate nonprofits.
✅ Organizations like the MoyaMoya Foundation and CU Kids at Heart are driving research, education, and legislative wins.
✅ You can help by raising awareness, fundraising, or simply sharing this post.

Together, we’re making Moya Moya less invisible—one voice, one story, and one act of advocacy at a time.

📢 Join the Moya Moya Strong Community

Be part of something powerful. Stay connected for the latest updates, real stories, and support resources as we fight for hope, awareness, and strength.