This year, I am participating in the 2026 Long Island Walk n' Roll in support of the National Ataxia Foundation, a cause that is incredibly personal to me and my family. 

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Spinocerebellar Ataxia (SCA) has been in my family for many generations. SCA causes the cerebellum, the part of the brain responsible for balance, coordination, precision, and motor control, to gradually shrink (atrophy) over time. As the cerebellum loses healthy nerve cells, the brain becomes less able to coordinate even simple movements, leading to worsening difficulties with walking, balance, speech, hand coordination, swallowing, and vision. Typical onset happens during a person's 40s to 50s, and although the progression is often slow, the effects profoundly impact independence and quality of life. If diagnosed with SCA, a person will always develop symptoms of the disease; it is 100% penetrable, and there is no cure and currently, no approved treatment to slow progression.

My grandmother has lived with the symptoms of SCA for more than 30 years, for many of which, she has been confined to a wheelchair as a result of the disease. My mother also battled the disease, living with symptoms for 18 years before receiving her diagnosis. In February of this year, after a courageous 17-year fight against breast cancer, my mom passed away. Throughout her cancer journey, we watched her ataxia continue to progress, adding another layer of challenge to an already difficult battle. Toward the end of my mother's life, and as a result of SCA, she had extreme difficulty walking, her hand coordination suffered greatly, she had difficulty swallowing, her speech became slurred, and she experienced involuntary eye movements. These symptoms stole her independence and ability to care for herself.

SCA continues to affect multiple generations of my family today, and thousands of people all over the world. Participating in this walk is a small way to support the National Ataxia Foundation to fund research, education, and support services for individuals and families facing this terrible disease.

What is Spinocerebellar Ataxia (SCA)?

Spinocerebellar ataxia (SCA) is a group of rare, progressive, hereditary neurodegenerative disorders that affect the cerebellum, the part of the brain responsible for coordination, balance, and movement. People living with SCA will experience difficulty walking, poor balance, slurred speech, problems with fine motor skills, and, in some cases, vision or swallowing difficulties. Symptoms worsen over time, gradually and drastically impacting a person's independence and quality of life.

Currently, there is no cure for spinocerebellar ataxia. Research funded by organizations like the National Ataxia Foundation is critical to advancing treatments, improving quality of life for those affected, and ultimately finding a cure for future generations.

If you are able, I would be grateful for your support.

• Donate: Every contribution, no matter the size, helps advance research and provides resources for those living with ataxia.

• Share: Sharing this fundraiser with your friends, family, and social networks is another meaningful way to help raise awareness. Rare diseases like spinocerebellar ataxia often do not receive the same level of attention, funding, or research as more common conditions. As a result, individuals and families affected by these disorders frequently face limited treatment options, delayed diagnoses, and fewer resources for support. While each rare disease may affect a relatively small number of people, collectively rare diseases impact millions of individuals worldwide. Supporting organizations like the National Ataxia Foundation helps ensure that conditions like ataxia are not overlooked and that researchers can continue working toward better treatments, improved quality of life, and ultimately a cure.

Thank you for taking the time to read our story and for supporting a cause that means so much to our family. 

With sincere gratitute,

Andrea and Team V