Walk for Graham
Annual Event Raises Awareness of Neuromuscular Disease
Photography Provided
A mother’s intuition is rarely wrong. Adrienne Vollmer started noticing weakness in her son Graham’s extremities from the time of birth. After being referred to a physical therapist, lactation specialist and pulmonologist, Vollmer knew she had to get to the issue behind the symptoms Graham was experiencing.
“Graham was referred to a neurologist who admitted him to Riley Children’s Hospital for diagnostic testing,” Vollmer says. “At about eight weeks old, Graham was diagnosed with spinal muscular atrophy.”
SMA is a genetic neuromuscular disease that causes muscles to become weak and waste away. People with SMA lose motor neurons in the spinal cord that control muscle movement. Without these, muscles don’t receive nerve signals that make muscles move.
“Graham has the most severe type of SMA,” she says. “We were told when he was born there was no treatment and no cure. Typically, if these type of SMA goes untreated, a person doesn’t live past the age of two.”
Luckily, the Vollmers enrolled Graham in a clinical trial when he was six months old.
“After he was enrolled in the trial, Graham received the first FDA-approved drug for the treatment of SMA,” Vollmer says. “We 100% believe Graham is still here with us because of the drug Spinraza.”
Graham is now six years old and will start kindergarten in the fall. Graham’s care is extensive and expensive. Vollmer joined a national organization called Cure SMA and serves as the Indiana chapter leader.
“Five years ago, we created the Cure SMA Walk for Graham,” Vollmer says. “Each year, except for last year due to COVID, we’ve had around 800 people participate. The second year, Governor Holcomb attended and signed a bill called Graham’s Bill so that newborns can be screened for SMA right away.”
This year’s walk is set for 5 to 9:30 p.m. Aug. 20 and starting at Coxhall Gardens in Carmel. The evening includes a one-mile walk through Coxhall Gardens, a prize raffle, food, music, and family-friendly activities.
“The funds raised from the walk go to Cure SMA,” she says. “A large portion of the funds raised go toward funding pharmaceutical companies who are working to cure SMA. The other portion goes toward supporting families affected by SMA. The organization not only cares about finding a cure but also assisting individuals and families living with SMA.”
This year Scott Allen, the voice of the Indianapolis Indians, will serve as the event’s emcee.
“It’s an enjoyable evening,” Vollmer says. “We’ll have food stations with ballpark food, smoothies from Tropical Smoothie Cafe and fun activities for families.”
Vollmer wants the evening to provide a sense of community for other Indiana families living with SMA.
“We want to be a support to these other families with kids and even some adults living with SMA,” she says. “I know the Westfield community wants to show support and get behind a cause. We’re asked a lot of times how people can help. One way is to come out and show your support. It brings us all together.”
For more information on Walk for Graham, visit prayersforgraham.com.
