New Jersey woman with rare ALS says ‘miracle drug’ stopped her disease

Eight years after receiving a life-shattering diagnosis, a New Jersey mother is crediting an “amazing” new drug for stopping her disease in its tracks. Raziel Green, a 52-year-old active runner and mother of two, was diagnosed with a rare form of ALS in 2017. Her journey with the disease began over a decade ago when she started experiencing symptoms such as heavy legs during runs and struggling to climb stairs.

Despite initial dismissals from neurologists, Green persisted in seeking answers due to a family history of ALS. It wasn’t until she saw a specialist in genetic diseases that she was diagnosed with the superoxide dismutase 1 (SOD1) gene and ALS. This form of the disease is caused by mutations in the SOD1 gene and accounts for a small percentage of ALS cases.

Fortunately, Green was offered the opportunity to participate in a clinical trial for an experimental drug called QALSODY® (tofersen) by Biogen. This medication, administered into the spinal fluid via a lumbar puncture every few weeks, is designed to target the toxic effects of SOD1 mutations. Within four months of starting the treatment, Green noticed a significant improvement and has not experienced any progression of the disease since.

Experts in the field, such as Dr. Timothy M. Miller and Dr. Thomas Purvis, have noted the promising results of QALSODY in treating SOD1 ALS. While there have been some side effects reported, including inflammation of the spinal cord and nerve pain, the benefits of the drug in slowing or halting the disease progression have been significant.

Green’s experience with QALSODY has allowed her to continue participating in her children’s activities and important life milestones. Despite needing a cane and wheelchair for mobility, her symptoms have not worsened, giving her hope for the future. The medication has now received FDA approval and is available for others with the same gene mutation, providing a sense of hope and stability for those living with ALS.

As research in ALS continues to advance, treatments like QALSODY offer new possibilities for managing and potentially halting the progression of the disease. Green’s story serves as a testament to the impact of innovative medications in improving the lives of those affected by rare genetic conditions.