Raziel Green, a mother from New Jersey, has found herself at the forefront of a medical breakthrough after battling a rare form of ALS (amyotrophic lateral sclerosis) for eight years. This once-active runner credits the experimental drug QALSODY® for stopping her disease in its tracks—a development she calls nothing short of "amazing."

Green’s journey began over a decade ago, when she noticed her legs felt unusually heavy during her routine runs. Soon after, climbing stairs became a struggle, and balance issues followed. Despite seeing multiple neurologists, her condition initially went undiagnosed. But Green persisted, knowing her family history of the disease. It was a specialist in genetic disorders who finally diagnosed her with a mutation in the SOD1 gene, which is responsible for 10%-20% of genetic ALS cases.

Green’s diagnosis came with grim expectations, but hope arrived in the form of a clinical trial at Mass General for QALSODY®, a drug developed by Biogen. Administered through spinal fluid injections every few weeks, the medication is designed to lower the toxic effects of SOD1 gene mutations. Within just four months, Green noticed dramatic improvements—and her condition hasn’t worsened since.

"My neurologist compared my current notes with those from seven years ago, and she couldn’t find any differences," Green shared. This stability has allowed her to stay relatively independent, even as she uses a cane full-time and a wheelchair for longer distances.

Dr. Timothy M. Miller, a neurology expert, explained that QALSODY® has shown promising results, with 20%-25% of patients experiencing halted progression or even signs of improvement. While side effects, including inflammation and nerve pain, have been reported in a small percentage of cases, long-term data suggests the drug is safe.

For Green, the benefits go beyond her own health. "This gives my kids the opportunity to get tested and use this medicine preventively," she said, emphasizing her hope for future generations. She continues to cherish life’s milestones—her children’s sports events, graduations, and even occasional trips to the gym.

With QALSODY® now FDA-approved, Green’s story is a beacon of hope for others battling this rare form of ALS. "It’s given me the strength to keep going," she said.

Rare Diseases News

Mother with Rare ALS Finds Hope in 'Miracle Drug' That Halted Her Disease