Promoting the wellness and prosperity of the communities and members that they serve is an important part of a credit union’s mission. These intentions are what helped create Credit Unions Kids at Heart, a nonprofit organization that combines the efforts of dozens of credit unions to raise funds to help fight pediatric diseases.
Credit Unions Kids at Heart (CU Kids at Heart) is a Massachusetts-based nonprofit that raises money to support research activities dedicated to “the prevention, treatment, and/or cure of pediatric neurological diseases, including Moyamoya disease, Cerebral Palsy, pediatric epilepsy and other seizure disorders, and pediatric brain cancer,” says the mission statement on the CU Kids at Heart website.
CU Kids at Heart was founded in 1996 by Eastern Corporate Federal Credit Union (EasCorp) with just a few local participating credit unions. Today, over 60 credit unions from both inside and outside of Massachusetts participate in the non-profit’s efforts, which have so far totaled to almost $9 million donated to Boston Children’s Hospital (BCH) and Beth Israel Deaconess Medical Center (BIDMC).
Currently, one of CU Kids at Heart’s main areas of focus has been on Moyamoya disease, which is, according to the National Institute of Neurological Disorders and Stroke, “a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia.” Patients diagnosed with Moyamoya have a drastically increased chance of suffering from a stroke, which can lead to cognitive and sensory impairments, communication disorders, visual or behavioral issues, and death. The Cincinnati Children’s Hospital notes that this disease is particularly rare, affecting approximately one in one million people in the United States. Moyamoya most commonly affects children, though adults can suffer from this disease as well.
“The impact of this disease on the life of a child is significant and can be truly devastating,” says Jane Melchionda, Chairman of the CU Kids at Heart Foundation. “Rare pediatric diseases are chronically underfunded by government entities, private funders and pharmaceutical companies. The Moyamoya research conducted at Boston Children's Hospital is immediately impactful in the lives of these children and is critical to the medical community's understanding and treatment of strokes in both children and adults. So, we put our heads together and thought, ‘if we can raise money each year and have an impact on some of these smaller, important research projects, that fits in with what credit unions are all about.’”
The unknowns that are associated with rare diseases like Moyamoya were experienced by Andover, Mass., mom Danielle and her son, Jackson, both members of CU Kids at Heart since 2014. At just 17 months old, Jackson suffered a massive stroke on the right side of his brain that left the left side of his body weakened. Jackson spent 48 days at BCH and Spaulding Rehabilitation Hospital undergoing tests to find the root causes of the stroke. Doctors thought that Jackson may be suffering from Moyamoya—a disease that Danielle and her husband had never heard of at the time—though his initial tests showed no indication of the disease. Three months after his initial stroke, a second MRI and angiogram showed that Jackson had Moyamoya and it spread very quickly throughout his brain.
Jackson underwent his first surgery at BCH just one month before his second birthday. The surgery, named pial synangiosis, was originally devised in 1985 by BCH pediatric neurosurgeon Dr. Michael Scott, and further developed by Dr. Edward Smith, also of BCH, who performed Jackson’s surgery. The surgery was initially successful, until a routine MRI one year later showed that the disease had spread. Before the age of three, Jackson had undergone two brain surgeries to treat Moyamoya disease.
Today, Jackson is eleven years old and doing remarkably well. He still works with an occupational therapist on some of his left side functioning but has graduated from the majority of his therapeutic work and Danielle describes him as a “typical fifth grade boy.” She says that her family feels lucky that doctors were able to catch the disease so early.
“The surgery couldn’t have gone any better,” Danielle recalls. “Doctors did not initially know how he was going to fare as far as walking and talking, but he has surpassed all expectations and milestones. Dr. Smith even said the surgery went as well as it ever could. We feel so blessed and fortunate to live so close to Boston Children’s where Dr. Smith changed his life.”
Top of page: Jackson, who is now 11 years old and enjoying the typical life of a fifth grade boy, smiles with his mom, Danielle, who will be running in this year’s Boston marathon to support the mission of CU Kids at Heart. This photo: Dr. Edward Smith, the neurosurgeon who performed Jackson’s pial synangiosis surgery, stands next to the Moyamoya Disease Awareness Day sign on his floor at Boston Children’s Hospital.
Catching Moyamoya early is imperative due to the disease’s rapid progression. However, Moyamoya is still difficult to diagnose due to its rarity, which can be extremely dangerous for patients.
“What’s interesting for us was that we live in Andover, about 27 miles north of Boston, and once we got home after Jackson’s surgeries and went to local therapists and doctors, nobody had heard of Moyamoya,” Danielle says. “We felt that this was mind-blowing… being so close to Boston where one of the surgeries was founded, there was such a lack of awareness.” Danielle had also connected with other families through social media and found out that they weren’t alone. There were more doctors, nurses, and therapists who did not have the information they needed about this disease. Says Danielle: “So that’s why children and adults were being misdiagnosed. And the issue with being misdiagnosed is that the longer it goes undetected, the more susceptible you are to a stroke.”
Danielle connected with Jane and CU Kids at Heart when Jackson was just 18 months old and undergoing testing at BCH. Jackson became a Patient Partner of the CU Kids at Heart, meaning that CU Kids at Heart volunteers can raise money at events—such as the Boston Marathon—in his name and for Dr. Smith’s research. Danielle inquired about raising both more funding and awareness of Moyamoya to help professionals receive the training and information necessary to diagnose and treat the disease. This sparked CU Kids at Heart’s effort to champion Moyamoya Disease Awareness Day.
Danielle spent nine years working with CU Kids at Heart on these efforts, including running in the Boston Marathon in 2015, 2018, and 2019 to raise funds to support Dr. Smith’s Moyamoya research and the team’s other research initiatives. The CU Kids at Heart team also worked to support legislation that would designate May 6 as Moyamoya Disease Awareness Day in the Commonwealth of Massachusetts.
John Howard, President & CEO of Merrimack Valley Credit Union—an active participant in CU Kids at Heart’s efforts—learned about Jackson’s story and was extremely supportive, helping to connect Danielle and CU Kids at Heart with Andover’s State Representative Tram Nguyen to enlist her help in passing the bill. On December 30, 2022, former Governor Charlie Baker signed Massachusetts House Bill 3211 into law, establishing May 6 as Moyamoya Disease Awareness Day.
“From the beginning, the support from Jane and the rest of the CU Kids at Heart team has been incredible,” Danielle says. “Not only did they come to the hospital after Jackson’s surgery to provide cards, prayers and support, but every single dollar that they have raised over the years goes to the hospital to support pediatric neurological research efforts, and it is amazing.” Both Danielle and Dr. Smith will be running in this year’s Boston Marathon on Monday, April 17, to raise money for CU Kids at Heart. “I’ve been honored to be a part of this team,” she says.
On May 6, 2023, the first official Moyamoya Disease Awareness Day, members of the community can celebrate by attending the BCH virtual Moyamoya symposium from 11 a.m. to 2 p.m. This free online event will feature an interactive discussion and Q&A with international experts regarding the Moyamoya treatment process, including the current research on the disease, risks and outcomes of the existing surgery, and the aftercare of living with treated Moyamoya. The event will also feature expert speakers from BCH, The Hospital for Sick Children in Toronto, Canada, and Great Ormond Street Hospital in London, United Kingdom. The symposium offers an opportunity to learn more about this rare disease and connect families who have experience with Moyamoya, helping them build a supportive network.
The Massachusetts Department of Transportation will also be helping to celebrate Moyamoya Disease Awareness Day by lighting up four bridges with blue light beginning 45 minutes before sundown on May 6 and ending at sunrise the following morning. The following bridges will be lit up:
The main entrance of BCH will also light up in blue and signs of support will greet the medical teams, patients and their families in the Moyamoya Program. facilities on the 6th floor.
To learn about other Moyamoya Disease Awareness Day activities, visit http://www.creditunionskidsatheart.org/ or click here to register for BCH’s virtual event.