The SMA community has been lobbying state and federal government for years. Kristen Smith shares how she became involved with advocacy.
Kristen Smith describes herself as an artist and advocate. A powerful combination during a time where people across the country are standing up for their community and speaking out for their rights. Kristen is also an adult living with spinal muscular atrophy (SMA) type 3 in Green Brook, New Jersey. She lives with Brandon Hull, her partner of seven years alongside their two black and white cats. Kristen and Brandon are both interested in politics and government. They work together on the advocacy initiatives as advocacy co-chairs for the North New Jersey Chapter. Kristen began her volunteer role as Advocacy Chair in January 2017.
SMA is a rare disease that robs people of the physical strength needed to walk, eat, or breathe. SMA does not affect a person’s ability to think, learn, and build relationships with others.
Kristen didn’t become an advocate overnight. She mentions that “advocacy is something I learned growing up, needing things that were “different” than most of the people who were around me most of the time.” People are often intimidated by advocacy and lobbying legislators. In reality, most people affected by SMA have been advocating for their family’s right to access schools, workplaces and public spaces that are accommodating to people with disabilities. Advocacy simply means to speak on the behalf of or in support of anther person, place or thing. Advocacy is the most effective way to create change, using your voice, stories and experiences makes the change happen.
Kristen remembers a time in the 90s when she witnessed her mother advocating for her and her family. Her mother lobbied her state and federal legislators for a pardon by explaining the complexity of their family’s situation. Individuals with SMA need specialized care and equipment, which can put enormous financial pressure on them and their families. Her parents were pardoned, and Kristen’s mom was seen as an advocate for special needs in her community. Kristen learned how to identify, address, and then advocate for issues. She began by advocating for herself at her public school, college and into adult life.
“I saw how one story can make a difference, which can help others with a similar story,” Kristen states.
Kristen is happy to use advocacy and activism to help her community. In October 2018, Kristen was honored by Somerset County Freeholder’s for her work in advocacy. She received the Individual Division 2018 Disability Advocate Award Citation for outstanding service in demonstrating a significant impact in meeting the needs of Somerset County Citizens with Disabilities.
Kristen works with Brandon to accomplish her advocacy goals and initiatives. “I’m also glad to be able to work on advocating and activism with Brandon; he’s the general to my field marshal,” she states. Together, Kristen and Brandon have worked on improving healthcare access, insurance coverage, medical access, and independent living for people with disabilities and chronic diseases.
Kristen and the North Jersey Chapter are excited about their upcoming initiatives and events in their local community. “Having more active volunteers would certainly help!” shares Kristen. It’s never too late to begin advocating for yourself and your community! Cure SMA has over 34 volunteer-led chapters across the United States. Chapters are always in search of more volunteers. Visit our Cure SMA Chapters page to find out how to get involved.