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"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."   - Margaret Mead

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Our World Moyamoya Alliance (WMA) team consists of carefully chosen members. From recently diagnosed patients to experts with 30 years of experience, the goal was to build a consortium to serve as leaders of medical change and healthcare reform, with a focus on moyamoya, stroke, rare disease, special needs patients, and their families.
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Our vision, integrity, goals, values, and commitment are based on hope and compassion. The diverse WMA service members are extraordinary, formed with the intentional reflection of the unique populations we serve. What's more, our team encompasses rare, firsthand medical experience, patient insight, family perspective, collaborative passion, and meaningful purpose. We are committed to selfless service to the international moyamoya, stroke, rare disease, and special needs communities.

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Moyamoya and other rare patients may face many healthcare obstacles, some having devastating impacts. We understand that general healthcare and health insurance standards may not fit the mold for our community's unique set of needs. Thus, it takes a global league of moyamoya patients, families, friends, neurologists, vascular and neuroradiologists, neurosurgeons, nurses, physical and occupational therapists, researchers, mental health professionals, and more to challenge the medical status quo.

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We aim to introduce optimism and hope where moyamoya patients and families have historically experienced oppression, isolation, fear, doubt, frustration, and shortcomings of healthcare delivery.

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WMA strives to increase moyamoya awareness, contribute to the international moyamoya research fund, and implement medical reform. We are proud to employ the advocacy of our founding team around the world, including the United States, Canada, Haiti, England, Germany, South Africa, Switzerland, the Netherlands, India, Japan, and Australia. Our work bridges healthcare gaps, addresses dehumanization, and the medical disparities facing those with rare diseases. 

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We understand that exceptional care requires a holistic approach; resulting from a collaborative, multidisciplinary, and interdisciplinary effort. A rare medical community is capable of positive, sustainable, extraordinary, impactful, and enduring coherent, comprehensive global change. The requisite for such medical change and healthcare reform is understanding the history of moyamoya diagnosis and treatment. Thus, effectively utilizing these building blocks to prepare and positively influence the future of healthcare equity. The stalwart nature of the moyamoya community speaks volumes regarding what it means to overcome challenges and hardships.
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We're proud of our team's moral and ethical resources. I acknowledge the time and effort taken by our team to lay the groundwork by establishing a global collaborative professional medical and patient network. Every life and effort has a purpose. We believe everyone has something they can contribute and consequently pay it forward to help others along their moyamoya journey.

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Furthermore, the organization strives for an inclusive, equitable, and adaptive workplace. Our conviction is based on being ever mindful of the needs of others. Empathy drives every aspect of our work for fellow patients with respect for their families regarding the unique, sometimes unseen, battles they face. Our commitment is steeped in integrity and powers the alliance's advocacy, which provides courage to face tough challenges. This passion is derived from the humanitarian service of doctor and activist, Hunter Doherty "Patch" Adams. His revolutionary healthcare philosophy shaped our nonprofit model. 

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We are honored, humbled, and excited to serve the moyamoya, stroke, rare disease, and special needs communities as a medical nonprofit organization. This labor of love by our leadership team, with collaborative efforts from other professional organizations, such as the Moyamoya.com admin team and the World Moyamoya Day administrative team, has been in the works since the early-2000s. Never standing stagnant, our objective is to forever refine and improve the reality of circumstances for the moyamoya community.

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We never imagined the right time to launch this nonprofit being amid a pandemic. However, presently, we are equipped to do so. As the moyamoya community has always pushed on through adversity, we emerge and press forward in these challenging times.

 

Hindsight is 20/20, and it's what you do with the knowledge and how you adapt that makes a difference when moving forward. Besides morals and ethics, our team values adaptability — as we strive to make the best of all circumstances, championing other rare patients and families to do the same.
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To moyamoya specialists, thank you for your commitment and service to the moyamoya community. To the moyamoya community, thank you for being our inspiration, the wind beneath our wings, and for empowering us daily. Our World Moyamoya Alliance team looks forward to continuing to serve with and for you!

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Humbly,

Tara MacInnes

President, Co-founder
Moyamoya patient, pediatric stroke survivor, and rare disease advocate

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*Written in May, 2021, shortly after World Moyamoya Alliance was founded.