Former Lacey HS Football player, now 32, needs your help as he battles ALS
When you step onto a football field locked arm-in-arm with your brothers there is a feeling of trust heading into the battle ahead that night because you know that as you put in your best effort, so will the guy next to you and next to him.
When that happens, great things, be it scoring or ultimately winning, can happen but you do it together. In order to succeed, 11-players, 22-players and the 50, 60 or so players on the team have to work together, help one another and push and cheer on each other.
That noise you hear -- it's the sound of parents, families, friends and fans cheering you on from the bleachers, rooting for you, cheering on the team, hoping for a great play and a great game.
Joshua Smith knows what that feeling is like, playing for the Lacey High School Lions under the legendary Coach Lou Vircillo and winning a title in 2006.
There's a new team now though, and there's no cap on the amount of people allowed on the roster -- in fact, the more the merrier.
The 32-year old has been battling ALS for three years now, being diagnosed when he was 29-years old. He's felt and seen first hand everything that comes with the illness, disease.
Suddenly though, his symptoms began to improve through a clinical trial. He needs your help, his mom Paula needs your help and his family needs your help to make sure the trial drug, NurOwn, that improved his symptoms and others, can move onto the next phase -- currently on hold by the FDA.
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Following his diagnoses and in the initial days, weeks and months Joshua went through all the emotions and physical changes as well.
"It's life-altering to say the least, I was 29 at the time, coaching middle school football and working in the family construction business....life was on the upswing and then I got diagnosed with ALS, " Joshua Smith tells Townsquare Media News. "At the time, the doctors said 'go home, get your affairs in order and there's not much to do, there's nothing out there, no treatments for you'. The life expectancy is 2-5 years to live -- that's something I didn't want to hear at 29-years old."
He says he didn't know much about the disease other than what he had heard from athletes who had or have it from New York Yankees Legendary First-Baseman Lou Gehrig to former New Orleans Saints Safety Steve Gleason who was diagnosed in 2011 at 34-years old and still continues his fight today and tries to help others as well through his Team Gleason Foundation and then from Pete Frates, the former Boston College Baseball Player who was behind the viral Ice Bucket challenge, was diagnosed at 27-years old and passed away in 2019 at the age of 34.
"What ALS does to the body is it robs you from everything, it slowly deteriorates your muscles, your nerve endings, your speech, your ability to breath," Joshua Smith said. "You literally get trapped in your body. That's why I'm out here speaking and using my voice to advocated for all those 30,000 Americans (with ALS) that can't speak out."
Joshua, his mother Paula, and everyone out there battling ALS with the aid from their caregivers continue to hope for treatment and pray for one day -- a cure.
"It's not fair that everyone can't get a treatment," Paula said. "When you have ALS, there's zero treatments. There are other things out there but they never get past the 3rd phase trial so they (those with ALS) never get to take them."
Their mission is two-fold -- help educate and inform others about ALS -- and then get the leaders in Washington to override the FDA to get a drug called NurOwn into Phase 4 so that more people suffering with ALS can have access to the treatment.
The FDA determined after the Phase 3 Trial, that there was no clear evidence that this medicine works.
Joshua Smith was one of 10 Americans in the Phase 3 Trial.
"The most important thing for Josh was that because he was apart of the trial, he was then offered the expanded access program, which he got into," Paula said. "Only 10 people got expanded access. So, only 10 people know they actually got the drug NurOwn and all 10 of those people have gotten better. Their progression has halted or they've improved."
What happened to him over the course of taking NurOwn during the FDA trial, may put a wrinkle into the FDA Phase 3 Trial report.
His condition improved.
"For Josh, he has improved, he has more strength now in his shoulders, he has more strength in his arms, his legs...his speech is better than it was...his breathing was at the capacity of an 80-year old man a year ago (lung capacity at 64-percent for Josh) and now since then with these 3 injections (during the trial) his breathing is at 105-percent which is the same as mine and yours," Paula said. "In the history of ALS, that's never happened."
Their mission pushes forward now to push the FDA to let this clinical trial reach Phase 4 and there are lawmakers willing to help make it happen, but more needs to be done.
So far, Representative Jeff Fortenberry from Nebraska has introduced a bill in the House (that has enough votes where it passed there) and Senator Christopher Coons from Delaware did the same in the Senate where, the legislation which would move the treatments to the next phase, now needs a lot of votes.
"Josh is getting better and Congress and the FDA are not hearing what's happening to the patients," Paula said.
She hopes that lawmakers and the FDA alike will not only look at pushing this trial into Phase 4 but also taking a deeper look into each ALS patient, in part to see how they're doing and what kind of improvements, if any, are happening.
Joshua is hoping for that change too, and that even if this treatment only works a little bit, improves symptoms only slightly but provides enough to see improvement overall and perhaps extend someone's life...it's worth it and better than nothing.
"Regardless of the case, 35-percent of being affective is better than a 100-percent fatal disease with no treatment," Joshua said. "If you got into a treatment, trial knowing that 'hey, this drug might not work but there's a 35-percent chance it does work...of course you're going to take it. That's common sense. It's already been proven to be ethical, safe and all that. It's been in trial for 15-years....15-years! and that's too long."
The improvements Joshua felt during and following the trial has not only improved his breathing but also allowed him to speak in more complete sentences without being winded and be able to do things like using utensils to eat and go outside and cut the lawn and was then able to go up and down 100 stairs/steps.
Joshua and Paula are now asking you to take some time to call and/or email New Jersey U.S. Senators Cory Booker and Bob Menendez to voice their support for the bill and more so vote in favor of passing it to get the clinical trial to Phase 4.
Call Senator Bob Menendez at 973-645-3030.
Call Senator Cory Booker at 973-639-8700 or email firstname.lastname@example.org
You can also get updates from Paula Smith on Twitter.