Justin's ALS Prayer
“Every day, ALS steals some ability I had the day before. The simplest of tasks are now difficult. I can no longer play or coach my lifelong sport of hockey, and my family is forced to dedicate their lives to my care. I pray every day that people with ALS get the chance to try treatments that are only available now in clinical trials. I pray we all get the chance to live before it’s too late.”
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Justin's Story
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.
Experimental treatments exist, but only to those enrolled in clinical trials. Even then, only 50% of participants receive the treatment, with the other half receiving a placebo. Justin’s ALS Prayer is that YOU will join the fight to make these treatments available to all, and help give him and 30,000 other ALS patients more time with family and friends. Please help answer his ALS prayer!
Life After Diagnosis
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’ve launched Justin's ALS Prayer as our way of fighting for his life. Please help us answer Justin’s ALS Prayer!
Our Goals
Justin’s Prayer exists to help give everyone with ALS the chance to live!
Our goals are simple but crucial:
Asking for help is something we never wanted to do. But we’ve come to realize that the inevitable loss of Justin’s income, coupled with the exorbitant cost of ALS care, will quickly exceed our ability to afford the care he needs and deserves.
Desperate for Hope
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.
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.
A Ray of Light: NurOwn
Justin was accepted into the third and final phase of the NurOwn trial at Cedars-Sinai in Los Angeles, CA. With thousands on the waiting list and only 200 participants accepted, we feel extremely blessed to be part of this trial that has shown signs of successful treatment for ALS.
We have made several trips to L.A. and Justin began the treatment part of the trial in January. As it’s a double-blind study, we won’t know whether Justin receives the treatment or the placebo. We look forward to giving you frequent updates as the trial continues.
Although the trial ends in October 2020, it may still take years to gain FDA approval for NurOwn. Justin doesn’t have years to wait. In months he could be confined to a wheelchair or lose the ability to eat, speak, or even breathe on his own. Justin’s ALS Prayer is for NurOwn (and other experimental treatments) to be available to all ALS patients before it’s too late.
Will you please help answer Justin’s ALS Prayer?
Justin Today
Less than a year after diagnosis, Justin is showing significant decline in his speech, balance, and dexterity. Each day he loses an ability he had the day before.
Watching this decline is excruciating, made even worse by knowing there are treatments beyond our reach with exception to the trial. Without access to experimental treatments, the months to come will rob him of his ability to eat, speak, walk, and eventually, breathe. We spend each day grateful for what we still have and praying for what we desperately need: a new pathway to treatment.
Through this site, we hope to inform and motivate YOU to help ALS patients like Justin live his best life. Time is not on our side, but we’re so glad you ARE!
How Can You Help?
ALS Frequently Asked Questions
What is ALS?
Amyotrophic lateral sclerosis (ALS), also known as Motor Neuron Disease (MND) or Lou Gehrig’s Disease, is a rare neurological disease involving the nerve cells (neurons) in the brain and spinal cord. These neurons are responsible for controlling voluntary muscle movements like walking, chewing, and talking. ALS causes these neurons to die, resulting in the wasting away of muscles and the inability to walk, dress, write, speak, swallow, and even breathe. There is no cure for ALS and no effective treatment to stop or reverse the progression of the disease.
On average, people with ALS die within 3 to 5 years from the first appearance of symptoms. But paralysis comes much sooner. The disease is progressive, meaning the symptoms get worse over time. ALS can affect anyone of any age, gender or race, but generally affects people between the ages of 40 and 70.
Approximately 5,000 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that at least 16,000 Americans may be living with ALS at any given time. Every 90 minutes, someone is diagnosed with the disease and someone passes away from it.What is NurOwn?
NurOwn stem cell therapy is currently the most promising treatment in development for ALS. It is considered experimental as it is still in the clinical trial stage and not FDA approved. NurOwn will not be a cure for ALS, but what it offers is the chance for a treatment that improves the quality and length of life. And that is all ALS patients are asking for – a chance.
Currently, NurOwn is not accessible to anyone outside the trial. Of the 200 trial participants, only half will receive the stem cell treatment, with the other half receiving a placebo. At the end of the trial, even if a participant has received NurOwn and experienced improvements in function and quality of life, the therapy will be revoked until approval by the FDA. And without intervention or early approval from the FDA, it will likely take years to bring to market. In the meantime, patients die waiting. This is why we, along with our family and friends, are doing whatever we can to bring attention to the plight of ALS patients and the need for access to therapies.
For more information about NurOwn, please visit https://brainstorm-cell.comJustin's Nighly Prayer
Dear God,
Thank you…
for my wife, Stacy, who makes me the luckiest person on earth.
for my kind and caring daughter, Varen.
for giving me a mother who devoted her life to my brothers and me.
for family and friends who want to spend time with me.
for our wonderful home where I feel safe and comfortable.
for my incredibly supportive employer who is encouraging me to spend time with my family.
for the mobility I still have today.
for the time I’ve been given to see the world with my family and say everything I want to say.
for the extraordinary 35 yrs. I’ve had. Even with my diagnosis, I have not lost sight of how fortunate I am.
God, I ask you for a miracle. Please cure all patients with ALS (pALS) and restore them to health. At the very least, get all pALS access to life-saving treatments like NurOwn.
Finally, if me having ALS ensures Stacy and Varen live long, healthy and happy lives, then I accept it as your will.