As a registered 501(c)(3) charitable organization, CU Kids at Heart has the opportunity to expand its fundraising efforts, to consider new collaborations and partnerships, to support public advocacy efforts, and to deepen its connections in the credit union community.
Collaborations and advocacy initiatives for the 2022-2023 season:
First Downs to Fight Moyamoya Disease
Credit Unions Kids at Heart is proud to partner with 98.5 The Sports Hub and Patriots wide receiver Jakobi Meyers for its First Downs to Fight Moyamoya Disease. For every First Down by New England's offense this season, Credit Unions Kids at Heart will help fund promising studies into Moyamoya for the purpose of finding therapies and treatments that help affected patients.
This initiative is supported by Digital Federal Credit Union, Granite State Credit Union, Hanscom Federal Credit Union, Jeanne D'Arc Credit Union, Merrimack Valley Federal Credit Union, Rockland Federal Credit Union, RTN Federal Credit Union, Service Credit Union, St. Anne’s Credit Union of Fall River, and Vertifi Software.
To learn more about the clinical trials, visit the Research page.
Moyamoya Disease Awareness Day Initiative and Advocacy
Image: The Credit Unions Kids at Heart team joined a Moyamoya Educational Briefing on Wednesday, November 1, 2017 at the Massachusetts State House, Great Hall. Pictured above (left to right) are: Danielle Ciaccio, Jim Duda, Lisa Deck, Senator Eric Lesser, Jane Melchionda, Marianne Zawacki, and Tracey Dickey.
For nearly a decade, the Credit Unions Kids at Heart team has advocated for Moyamoya Disease Awareness Day in the Commonwealth of Massachusetts. Moyamoya Disease is a rare neurological condition that, if left undiagnosed and untreated, leads to serious and even fatal pediatric stroke. While this is a progressive disease, if caught early, it can be treated with surgery. And, research on Moyamoya has far-reaching impact on the treatment and potential cure of stroke and other brain injuries in children and adults.
Armed with resources provided by Dr. Edward Smith, a leading expert in the study and treatment of Moyamoya at Boston Children's Hospital, the group educated senators, state representatives, staff members, and attending members of the public on the symptoms and outcomes of the disease and the importance of early detection and treatment in improving the prognosis of patients. They explained why the passage of Senate Bill 1723 would be instrumental in raising public interest and awareness on Moyamoya and those affected by it. Advocacy days expand the base of support, making the voices of those living with Moyamoya more powerful in the pursuit of improved care and support. Moreover, advocacy days related to medical conditions draw the attention of the medical community, validating the need for research funds and ensuring that doctors recognize the symptoms and understand the diagnosis protocols.
In December 2022, the Moyamoya Disease Awareness Day Bill was signed into law, declaring May 6, a date that recognizes the medical teams worldwide whose contributions have led to a better understanding of the disease, as Moyamoya Disease Awareness Day in Massachusetts. Thank you to all who supported this advocacy effort, including Danielle Ciaccio, Jim Duda, Senator Eric Lesser, and Representative Tram Nguyen. Please honor the day with us by wearing blue and sharing the linked resources provided by Boston Children's Hospital. To learn more about this bill, please visit the Massachusetts State Legislature page at https://malegislature.gov/Bills/190/S1723. To learn more about Moyamoya Disease, please visit: https://www.childrenshospital.org/conditions/moyamoya-disease and learn to recognize the symptoms of stroke at https://www.childrenshospital.org/conditions/stroke.