Moyamoya Disease Awareness Day is May 6, 2024
May 6 is Moyamoya Disease Awareness Day and Credit Unions Kids at Heart®, its Participating Credit Unions, and Corporate Sponsors have organized advocacy initiatives and observances in local communities.
Moyamoya is a rare and progressive neurological disease in which the blood vessels that supply blood to the brain narrow, restricting blood flow. If left untreated, this dangerous disease can cause life-threatening strokes in children and adults, resulting in long-term, debilitating impairments.
Early diagnosis and treatment are critical. On May 6, 2024, help us educate the public and the medical community about this disease. Wear blue, participate in the events listed below, print out this fact sheet provided by Boston Children's Hospital, global leaders in the study of this disease, or share the CU Kids at Heart press release.
Local Events and Activities
- Proclamations: Substantiative, official proclamations recognizing May 6 as Moyamoya Disease Awareness Day have been made by Massachusetts Governor Maura Healey, City of Boston Mayor Michelle Wu, and other local mayors, deeming the day of civic importance and drawing notice from the public and the media.
- Commonwealth of Massachusetts, Governor Maura Healey
- City of Boston, Mayor Michelle Wu
- City of Gloucester, Mayor Gregory Verga
- City of Pittsfield, Mayor Peter M. Marchetti
- City of Springfield, Mayor Domenic Sarno
- Buildings, Bridges, and Digital Displays: Municipal and privately-owned buildings, bridges, and digital displays will be lit in blue or will include other Moyamoya Disease Awareness Day signs in advance of or on May 6.
- The Prudential Tower, Boston’s tallest standing building and one of the most famous beacons for non-profit causes on the city’s skyline, at 800 Boylston Street, Boston
- The IBEW Local 103 digital billboard at union headquarters at 256 Freeport Street, Dorchester, and facing the well-trafficked interstate 93
- The digital marquees at the DCU Center Arena and Convention Center entrances at Foster Street and Major Taylor Boulevard
- Government Center in the City of Fall River
- City Hall in the City of Pittsfield
- Municipal buildings and local landmarks in the City of Springfield
- The main entrance of Boston Children’s Hospital Main Entrance at 300 Longwood Avenue, Boston, will be lit in blue and additional signs will greet the medical teams, patients, and their families in the Moyamoya Program facilities on the 6th floor.
- A number of credit unions will include stories in their newsletters, blogs, and on social media. Merrimack Valley Credit Union, for example, wrote an article about CU Kids at Heart Patient Partner Jackson, a Moyamoya disease survivor. Look for the use of the following hashtags: #MoyamoyaDay, #MoyamoyaAwareness, and #CUKidsatHeart.
- Workplace Observances: Participating Credit Unions, Corporate Sponsors, and area businesses will recognize the day with their employees, members, and customers in various ways, including, but not limited to, fundraising challenges, wearing blue clothing, sharing educational resources online and on social media, distributing informational flyers, and more.
- 98.5 The Sports Hub Radio Spots:Longtime CU Kids at Heart media partner 98.5 The Sports Hub will run public awareness campaign spots all day. During the last New England football season, CU Kids at Heart and select Participating Credit Unions partnered with the station and with offensive guard Cole Strange for its First Downs to Fight Moyamoya Disease initiative. For every first down by New England's offense, CU Kids at Heart donated toward promising Moyamoya studies conducted at Boston Children’s Hospital.
Coming Up on Friday, May 10, 2024
Annual Boston Children's Hospital Moyamoya Disease Symposium: Held virtually, this conference will feature international experts from Boston Children’s Hospital (Massachusetts, US), Beth Israel Lahey Health (Massachusetts, US), Dartmouth Health (New Hampshire, US), The Hospital for Sick Children (Toronto, CA), and Great Ormond Street Hospital (London, UK). Sessions cover a range of topics from genetics to treatments, risk to outcomes. Learn more or register on Eventbrite.
Show your Support
To add your event or observance to our list, or to share your pictures from the day, please contact us at cukidsatheart@eascorp.org.