Five Questions With: Marisol Garcia

"Many kids living with epilepsy find it challenging to have a typical childhood for fear of the unknown."

Marisol Garcia is executive director of The Matty Fund, a nonprofit committed to improving the lives of children and families living with epilepsy. She has more than 20 years’ experience working within the Rhode Island community across various positions in the non-profit, government, and communications fields. Before joining The Matty Fund earlier this year, Garcia served as the director of constituent services for Congressman David Cicilline, a position she held since 2011. Here she discusses the organization’s mission and latest designation as a KidCents charity.

PBN: How many kids and families does the fund support and to what extent is the demand increasing?
GARCIA:
The Matty Fund is the leading resource for children and families in Rhode Island whose lives have been impacted by epilepsy and severe seizure disorders. Since Richard and Debbie Siravo launched the organization in 2003, we have helped more than 240 families across the state, with programs like the Discovering My Epilepsy Support Groups, the Epilepsy Resource Center, Camp Matty, our scholarship program, and a variety of other activities.
In the beginning, we helped a handful of families in our first year. The Matty Fund is also dedicated to supporting research for epilepsy cures. This is why we have donated more than $100,000 to various initiatives, and why we have a partnership with both the Warren Alpert School of Medicine at Brown University and Hasbro Children’s Hospital. We also build awareness about epilepsy with two major campaigns. One is our partnership with the URI College of Business and our other is our Matty Hatty program, which has reached students throughout New England and helped educate more than 7,000 students and teachers per school year.

PBN: What are the biggest challenges for kids with epilepsy and how does your organization help?
GARCIA:
Epilepsy is a neurological disorder that causes moderate to severe convulsions, or seizures. Epileptic seizures can last anywhere from a few seconds to a few minutes, and usually will occur unprovoked. Epilepsy does not have a known cure, and medications and treatments vary from person to person, especially with young people.
Because of this, many kids living with epilepsy find it challenging to have a typical childhood for fear of the unknown. Some are wary of doing or being around anything that could potentially trigger an unwarranted and dangerous seizure, which could be something as simple as a game of soccer or a flashing TV screen. They and their parents are forced to deal with the very real, day-to-day anxiety of when, where, and with whom their next seizure may strike.
Our mission at The Matty Fund is to help ease those concerns, and educate others about the disease. Our Resource Center works to raise awareness about epilepsy throughout the state and is dedicated to equipping institutions, especially schools, with the skills and knowledge to aid children affected by the disorder. We also provide support groups for families to reach out to one another and share their own experiences as well as put on special, fun events for families to enjoy. As a nonprofit, we offer quarterly parent educational workshops addressing the many issues our families face living with epilepsy.

PBN: What do parents find are the best ways to support children with epilepsy and how do they help shape your programming?
GARCIA:
Our sense of community is our strongest resource. Most parents find that just being able to talk with other families touched by epilepsy and share experiences is a great way to both learn about the disorder and support their children. The families play a huge role in our program as they are the ones who know their children and their individual needs the best. They know what works and what does not, and they can help other families come up with different solutions to issues related to epilepsy.
Our more “fun” events like Camp Matty or Matty’s Pumpkin Festival have also proven to be successful in letting kids interact with one another and not be distracted by the fear of a seizure. They are able to meet others like them and realize that they are not alone in their struggle.
Parents also know that it is extremely important to be open and honest with their children about the potential limitations of their disorder. Educating both the child and those who are in regular contact with the child, such as school administrators, friends, or other family members, is very important to maintaining safety and it shapes the way we at The Matty Fund go about raising epilepsy awareness.

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PBN: Your nonprofit has been selected by The Rite Aid Foundation as a new KidCents charity. Tell us what it means to your organization.
GARCIA:
The Matty Fund is one of only two Rhode Island charities to be included in the prestigious KidCents program, and one of only 204 organizations in the entire nation to earn the honor. The KidCents program allows Rite Aid Wellness+ customers to round their purchase up to the nearest dollar amount and donate the change to a non-profit organization of their choice. As part of the round up program, The Rite Aid Foundation will is awarding each of the 204 charities with a $10,000 KidCents grant. Not only is this a great way to get the community involved in our cause, but it validates our work in helping families across the region who are facing epilepsy and will help raise epilepsy awareness to a much wider audience. Just announced in mid-September, we know it will have a huge impact on our ability to expand our services to more families in the region facing epilepsy.

PBN: Which programs are your most popular? What new programs are on the horizon?
GARCIA:
The Matty Fund is proud to host a number of successful programs and events throughout the year. The Discovering My Epilepsy Support Group is our most utilized service, with four installments across Rhode Island and a very active group on Facebook. DME is a support group offered to children, teens, and families living with epilepsy. Members help one another understand the many changes and challenges that can come with the disorder. Each meeting provides a safe, secure, and stimulating environment as well as the opportunity to make new friends and create a support network or community amongst affected families.
Another one of our most well-known programs during the summer months is Camp Matty. Camp Matty is a therapeutic horseback riding summer day camp that is specifically geared towards children living with epilepsy. Therapeutic riding helps children improve balance, coordination, focus, independence, confidence, motor and social skills while building a rewarding relationship with an animal.
Our Matty Hatty Day is also quite successful, with over 30 elementary schools and more than 7,000 students in New England participating per year. Matty Hatty Day is a designated day in February, in which schools teach students and raise awareness about epilepsy in an uplifting manner. Schools participating in Matty Hatty will find that this easy-to-follow curriculum will not only build epilepsy awareness, but also will be a fun, exciting way to educate children on the significance of giving, acceptance and the value of celebrating diversity.
Our goal is to expand all of our existing programs and services and reach even more families living with epilepsy throughout the region. We are also focused on educating the community on epilepsy and seizure safety.

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