Folly couple raises funds and awareness to help son and others fight rare genetic disorder
Special to The Current
Folly Beach residents Laura and Jim Harbin knew nothing about SMA until last October, when their newborn son, Max, was diagnosed through South Carolina’s recently expanded newborn screening program. SMA, a rare recessive genetic disorder affecting about 1 in 15,000 births, causes the progressive loss of motor neurons, leading to muscle weakness and, if untreated, respiratory failure. Historically, the most severe form—SMA Type I—was the leading genetic cause of death for children under two.
But Max’s story represents a new era of hope. Thanks to early diagnosis and groundbreaking advances in treatment, he received Zolgensma, a gene therapy approved in 2018, at just four weeks old at MUSC Children’s Health. Now, at nine-and-a-half months, Max is healthy, active, and meeting all of his developmental milestones—a future that, just a decade ago, would not have been possible.
To help raise funds for SMA research, a golf tournament will be held Oct. 26–27 at Kiawah Island Golf Resort. Teeing Off to Cure SMA is a two-day fundraiser dedicated to supporting Cure SMA, the world’s leading nonprofit focused on funding research and providing critical support for families affected by Spinal Muscular Atrophy (SMA). Much of this progress in the field is due to Cure SMA, founded in 1984, which has been instrumental in securing newborn screening nationwide and funding the research that made therapies like Zolgensma a reality.
All proceeds from the event will benefit Cure SMA’s dual mission: advancing life-changing research and providing ongoing care for families still grappling with the challenges of SMA. Organizers also hope the event will raise awareness locally, highlighting both the continuing needs of affected families in South Carolina and the pioneering work being done at MUSC under the leadership of Dr. Neena Champaigne, a national leader in genetic medicine.
For the Harbin family, and for many others, the event represents more than just a golf outing—it’s a chance to celebrate progress, build community, and ensure that hope continues to grow for every child facing SMA.
The golf fundraiser also owes its creation to a chance connection. Around the time of Max’s diagnosis, Spencer and Farish Perlman, longtime Cure SMA supporters who recently relocated to Kiawah, were exploring ways to engage their new community. Spencer has served on the organization’s board for over a decade, and as his term nears its end, he and Farish wanted to ensure their involvement continued.
Through volunteer work with the Kiawah Women’s Foundation, Farish crossed paths with Barbara Willhoft, Max’s grandmother, who had also recently moved to Kiawah. Realizing their shared ties to SMA, the families joined forces. Along with close friends Julie Gidcumb and John Minner, they formed a steering committee to bring the vision of “Teeing Off to Cure SMA” to life, with support from Cure SMA’s Chief Development Officer Jamie Gibson and her team.
The Teeing Off to Cure SMA event will be held Oct. 26-27 at Kiawah Island Golf Resort. For more information or to register, visit www.curesma.org/teeing-off-to-cure-sma.
