Laura & Jim Harbin with son Max
The inaugural “Teeing Off to Cure SMA” golf event will take place Oct. 26–27, 2025, at Kiawah Island Golf Resort. This two-day fundraiser will directly benefit Cure SMA, the world’s leading nonprofit organization funding research and providing support for individuals and families impacted by spinal muscular atrophy, a rare and progressive neurodegenerative disease.
The story of how this event came to fruition is one of fate, hope and a community’s determination to ensure that all affected individuals and families in the Lowcountry have access to life-altering therapies and care.
Laura and Jim Harbin of Folly Beach had never heard of spinal muscular atrophy (SMA) until Oct. 25, 2024, the date their firstborn son, Max Harbin, was diagnosed with SMA at one week old via newborn screening. The Harbins quickly learned that SMA is a rare recessive genetic disorder affecting about 1 in 15,000 births. It causes the loss of motor neurons and muscle weakness, impacting walking, swallowing and breathing. About 1 in 50 people are unaffected SMA carriers, like Laura and Jim. If two carriers have a child, there is a 1-in-4 chance that child will have SMA. While genetically very different, SMA presents like a childhood version of ALS, with progressive loss of muscle movement.
The natural history of SMA Type I is devastating, and the disease historically has been the leading genetic killer of children under the age of 2. Children are typically diagnosed at 3 to 6 months after demonstrating progressive muscle weakness and failing to hit key milestones. If left untreated, infants are never able to lift their heads, sit independently, crawl or walk; they often struggle with feeding and swallowing (requiring a feeding tube); and suffer from severe respiratory insufficiency. Life expectancy beyond age 2 is very unlikely without significant respiratory support such as ventilation.
Fortunately for the Harbins, Max was born at the right time to benefit from recent public health and scientific advancements in the diagnosis and treatment of SMA. Thanks to his pre-symptomatic diagnosis through newborn screening — which did not become available for SMA in South Carolina until 2022 — Max’s motor neurons remained intact and made him eligible for a gene therapy called Zolgensma, which won FDA approval in 2018. Zolgensma is one of three therapies specific to the treatment of SMA that have launched since 2016. Max received Zolgensma at 4 weeks old at MUSC Children’s Health in Charleston from Dr. Neena Champaign, who built a nationally recognized genetic medicine program largely from scratch over the past few years to treat children with rare genetic disorders.
While Max will always have SMA and continues to receive regular physical therapy, thanks to newborn screening and Zolgensma, he has hit all his major milestones and is nearly walking at 9 1/2 months. He is a happy, healthy and very active baby who can expect a normal life expectancy.
The advances in newborn screening and gene therapy are due in large part to decades of investments and actions taken by Cure SMA, the world’s leading organization dedicated to funding research and providing support to individuals with SMA and their families. Founded in 1984 in suburban Chicago, Cure SMA led the 15-year push for SMA newborn screening in all 50 states and provided critical seed funding in 2010 for the genetic research that led to the development of Zolgensma.
Around the time of Max’s birth, Cure SMA board member Spencer Perlman and his wife, Farish, longtime residents of Bethesda, Maryland, who recently relocated full time to Kiawah Island, were in the early stages of planning a Kiawah-based fundraiser for Cure SMA. Spencer has been involved with Cure SMA for 27 years, the last 11 as a board member, while Farish has assisted with event planning as a volunteer. With Spencer set to roll off the board at the end of 2025, the Perlmans wanted to establish an event to continue their involvement with Cure SMA and engage the Kiawah community.
By chance, Farish also volunteers with the Kiawah Women’s Foundation alongside Max’s grandmother, Barbara Willhoft. Like the Perlmans, Barbara and Gene Willhoft recently relocated permanently to Kiawah Island from Westchester, New York. Once it became clear that they had a shared connection to SMA, the Harbins and Willhofts quickly joined forces with the Perlmans and the Perlmans’ close friends on Kiawah, Julie Gidcumb and John Minner, to form a steering committee to launch the inaugural “Teeing Off to Cure SMA” golf event, with the support of Cure SMA Chief Development Officer Jamie Gibson and her team.
All proceeds from the event will go to Cure SMA to fund ongoing research and support for the SMA community, particularly those individuals born before SMA newborn screening and gene therapy who continue to face unmet needs, including medical care and support for daily living. Several families in South Carolina affected by SMA require ongoing assistance such as that offered by Cure SMA. The steering committee also hopes to raise awareness of SMA in the Lowcountry and highlight the groundbreaking work of Dr. Champaign and her team at MUSC Children’s Health.
Click here for more info.,