Justin’s ALS Prayer

Justin's ALS Prayer

www.justinsalsprayer.org/

Cincinnati, OH

ALS is 100% fatal, but experimental treatments stuck in trials could take ALS from terminal to treatable for the first time in history! We need your help to make it happen.

Help ALS patients gain access to NurOwn and other experimental treatments.There are currently two legislative bills being considered to ensure access to treatment and establish a pathway to treatment approval.

A 50% chance to receive the treatment is one we’ll gladly try versus the 0% survival rate we’ve been given. Even if Justin received the placebo, we’d be contributing to the greater good and perhaps someone else would benefit from what was learned.

$300,000 a year

In the spring of 2019, Justin visited his doctor with complaints of weakness in his left arm and occasional slurred speech.

Tests for a pinched nerve turned into more tests and an appointment with a neurologist. Two months later he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a terminal neuromuscular disease that will take his life within 3-5 years. Paralysis comes much sooner. There is no treatment and no cure. At the age of 35 and in the prime of his life, Justin’s hopes and dreams for himself and his family have been taken in an instant.

“The diagnosis of ALS was a crushing blow, and the months following have been difficult. Lifelong goals and plans were suddenly cut short.

We were advised to get our affairs in order and spend the time we had left with the people we loved. And no one can tell us exactly how much time we have left.

We spent the first few months traveling with our 8 year-old daughter, Varen, to places we previously thought we’d have a lifetime to see. Each venture was a bittersweet opportunity to make memories for the future; a future Justin fears he won’t have with us.

We researched everything we could find about ALS, desperate to find something that would help.

Several experimental treatments are being carried out in clinical trials, the most promising being a stem cell therapy called NurOwn.The therapy, now in the last phase of clinical testing, has halted and even reversed the symptoms of ALS for people in earlier trials.

The trial is not without risks. Only half of the participants receive the therapy, with the other half receiving a placebo throughout the 12-month study. Even though the treatment and medical care are provided for free, we have to make at least 14 out-of-state visits and pay for lodging and transportation across the country ourselves.”

Members of EFFGG developed an online patition system to gather signatures to help Justin and 30,000 other people with ALS gain access to life saving therapies.

ALS is 100% fatal, but experimental treatments stuck in trials could take ALS from terminal to treatable for the first time in history! We need your help to make it happen.

Help ALS patients gain access to NurOwn and other experimental treatments.There are currently two legislative bills being considered to ensure access to treatment and establish a pathway to treatment approval.