Community Spotlight: Nick Farrell

In honor of National Volunteer Month in April, Cure SMA is sharing stories and quotes from volunteers who support our programs and further grow our community. Cure SMA is incredibly grateful for the volunteers who keep this organization strong.

You might know Nick Farrell as the newest Chairperson of the Cure SMA Board of Directors. Nick and his wife Kacey have three daughter ages 6, 10, and 12 years. Nick became part of the SMA community when his middle daughter, Blake, was diagnosed with SMA Type 2 at 14 months of age. Soon after her diagnosis, a local family introduced the Farrell’s to Cure SMA, and within days, they received a newly diagnosed care package. It was not long before the Farrell family got involved with Cure SMA, hosting an annual golf event while also participating in local Walk-n-Rolls and chapter activities.

As Nick reflects on his time as part of the SMA community, he highlights the strong bond Cure SMA offers individuals with SMA and their families. “For us, being part of the community means we are not alone. SMA can be scary and may feel isolating. But knowing there are others out there like us—and drawing upon their support, knowledge, and experience—is truly life changing. I don’t like to think about what our lives would be like without Cure SMA.”

Quote from Nick Farrell, father to Blake and Chairman of the Cure SMA Board of Directors that reads "We recognized the importance of the work Cure SMA was doing, and the incredible progress that it had made over the years. We wanted to not only be a part of it, but to do everything we could to accelerate it.”

Nick has been volunteering as a member of the Cure SMA Board for three years. In 2020, he became the Chairperson. “We’ve got big plans, and the three approved treatments we now have are only the beginning,” shares Nick. Emphasizing the importance Cure SMA volunteers have had on the organization, Nick adds “they are directly responsible for the accomplishments our organization has enjoyed, and we could not survive without them.”

With more than 6,400 volunteers and over 32,000 hours of service, volunteers are the backbone of Cure SMA. Nick credits our volunteers for the progress Cure SMA has made in having three FDA-approved treatments, which is uncommon for a disability as rare as SMA. “Each person who gives themselves to our mission multiplies our chances of achievement. And our successes have been nothing short of miraculous, and we only expect them to grow,” stated Nick. And yet, there is still much work to be done. Nick shares that while the stakes and expectations are very high, resources are finite. There really is a direct correlation between our volunteers and the outcomes the organization can generate.”

A Final Note from Nick Farrell:

On behalf of the Board and all Cure SMA Staff, I would simply like to say thank you to all Cure SMA volunteers across the country. I wish there were something we could give you that is worthy of all that you have given us. But I can promise you that our Board is incredibly grateful, and we work every day to ensure that your gifts to the organization translate into a better, stronger, and healthier SMA community.




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