A Mother's Fight: Melissa’s ALS Journey and Her Hope for a Cure

Melissa was 34 years old, healthy, active and navigating life with two young sons when she noticed something was off. At first, she chalked up the fatigue and difficulty lifting her baby to the demands of new motherhood.

 “You just think you’re postpartum and tired,” she said. But the weakness didn’t go away—it worsened. In June 2023, just seven months after giving birth to her youngest, Melissa was diagnosed with amyotrophic lateral sclerosis, known as ALS.

 Often called Lou Gehrig’s disease after the famous baseball player diagnosed with the condition, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over time, patients lose the ability to walk, talk, eat and eventually breathe. There is no known cure and treatments are limited. It’s a devastating diagnosis, especially for someone like Melissa, a young mother in the middle of a vibrant and busy life.

Melissa says, “It didn't feel like something I could accept. I'm not the norm, the demographic. I don't fit into the normal tick boxes of someone with ALS, so it was really hard for us to accept.”

ALS is a rare disease with about 5,000 people newly diagnosed in the U.S. each year. Early symptoms include muscle twitching, weakness in limbs, slurred speech, or difficulty swallowing. As it progresses, ALS impacts mobility and breathing. Most people with ALS live 2–5 years after diagnosis, though some live longer with the help of specialized care.

There is no single cause for ALS, though researchers believe genetics and environmental factors both play a role. According to the ALS Association, the average age of ALS diagnosis is 55, and ALS is 20% more common in men than women.

Research teams at the ALS Center at Emory Healthcare are actively working to better understand ALS and uncover more effective treatments. As a national leader in ALS research, the Center participates in clinical trials that explore connections between genetic factors and ALS.

But the biggest contributor to one day understanding ALS are patients like Melissa.

Since the diagnosis, Melissa’s life has changed. Physically, she is no longer walking, has difficulty with hand and arm movements, and advancing weakness. She is grateful to still have her voice despite becoming winded more frequently.

Emotionally, she admits to a lot of ups and downs and hard days. Yet, her days are full: caring for her boys, navigating therapies, coordinating with care teams and continuing to work despite ALS reshaping her daily life.

Melissa’s husband, Garrett, is her primary caregiver—managing family logistics, emotions and the weight of a future that is uncertain.

"When we got the diagnosis, I immediately rethought our future as a family—me, as a husband, and her as a mother. We had to completely reevaluate what we were going to get out of the next couple of years," Garrett shared.

What grounds Melissa most is her resolve to remain present for her sons. “I try to find the good in the day. When I'm having a hard day, I can't sit in it for too long,” she says. She is fueled by her love of being outdoors and spending time in nature—passions that continue to shape how she connects with her family, even as her mobility has changed. 

For most people with ALS, treatment includes managing and slowing the progression of symptoms, as well as maintaining strength and function. After diagnosis, Melissa turned to the experts at the ALS Center at Emory Healthcare —recognized as one of the top ALS clinics in the country. There, she met neurologists Jonathan Glass, MD, professor of neurology and pathology and Christina Fournier, MD, MSc, associate professor of neurology, who would help shape her care team.  

“The support from Dr. Glass, Dr. Fournier and all of the Emory Healthcare team has been very vital for my progression in this disease and finding the best care and plans moving forward,” says Melissa. “They're all very involved and really care about their patients.”

Melissa is one of a select few patients enrolled in an expanded access program for a promising new therapy called RAPA-501. The treatment involves modifying a patient’s own immune cells and re-infusing them to reduce inflammation and potentially slow disease progression.

“This clinical trial is kind of a special clinical trial,” said Dr. Glass. “It’s called an expanded access trial, meaning that this is a trial for patients who actually don’t qualify for a regular clinical trial. We’re one of only a few places in the country that are doing it.”

Melissa says participating in the trial gives her a sense of purpose—knowing that even if it doesn’t help her long-term, it may help someone else down the line. 

Melissa’s story is still being written. With every appointment, every clinical trial infusion, every morning spent reading books with her boys, she is choosing hope.

As Dr. Glass shared, Melissa's commitment to the trial—and her willingness to meet its physical and emotional demands—has made her an extraordinary partner in her own care and a vital force in advancing ALS treatment.

“It's a lot of work. It's very aggressive, but she is a trooper,” he said. “She comes in and smiles, and we poke her and prod her, getting the intravenous lines into her and things like that. But she says, keep going, keep going. I want it done.” He added, “She's a good person, but she's a good trial patient as well.”

Strength On and Off the Field

Beyond the clinical trial, Melissa is also committed to putting a face to ALS to raise awareness.

She and her family will join the Atlanta Braves and Emory Healthcare, the official team healthcare provider of the Braves for ALS Awareness Day at Truist Park on June 4, 2025. The event honors those living with ALS, celebrates the legacy of Lou Gehrig and raises awareness for the vital research and care being done at institutions like Emory. The Atlanta Braves Foundation will make donations to both Live Like Lou and the Emory ALS Center—supporting quality of life grants and advancing research and clinical trials.

Melissa’s favorite part of the night will be her four-year-old son throwing the ceremonial first pitch in her honor, with help from his father, Garrett.

She’s looking forward to making memories with her family—and encouraging others to support the work that makes more time and more tomorrows possible for people living with ALS.

Support ALS Awareness Day with Emory Healthcare and the Atlanta Braves

You are invited to come out and support ALS Awareness Day at Truist Park on June 4, 2025 presented by Emory Healthcare. Learn more about Emory ALS Center and its research.